fall 2009: volume 15, issue 2

newsletter of the myelodysplastic syndromes foundation From the Guest Editor’s Desk 10th Int’l Symposium on Myelodysplastic Syndromes

there were 36 selected oral communications, and by adding the six presentations of the young investigator’s plenary session, a total number of 42 oral presentations were given, which is higher than the respective number of the previous symposia. There were 139 poster presentations, divided into two sessions, and 181 submitted abstracts for Contents Argiris S. Symeonidis, MD presentation. The symposium venue was and Nicholas C. Zoumbos, MD Drug News 10 nice, with continuous availability of coffee, University of Patras Medical School refreshments, and snacks. The fine weather Young Investigator Grant Program 11 Hematology Division also permitted many participants the Meeting Highlights/Announcements 12 Patras, Greece opportunity to visit the famous ancient ruins of Delphi and Olympia, which stand at a Current Discussions in MDS 15 Patras, Greece: May 6–9, 2009 distance of about 100 kilometers from Patras. Foundation Initiatives 18 The city of Patras, the third largest city in The Opening Ceremony was bright and Greece and the Cultural and Convention consisted of music and folk dancing, the Patient Services 19 Center of its university, had the honor of Suzanne Fleischman Memorial Lecture and Patient Forums and Support Groups 20 hosting the 10th International Symposium a lecture on Greek medical history. The on Myelodysplastic Syndromes, May 6–9, musical part of the ceremony combined the Patient Advocacy 23 2009. In this symposium, all new information traditional Greek music and the folk dancing Patients Share Their Stories 25 on the classification, pathogenesis, prognostic by the employees and students of the factors, and on the latest treatment University of Patras Dance Club, with the Patient Tributes 29 approaches for MDS were discussed. The modern adaptation of Manos Hatzidakis’ Nutritional Health 32 symposium was attended by approximately “Reflections,” performed by the Greek Rock 1200 participants originating from 55 Band “Raining Pleasure.” The Suzanne MDS Centers of Excellence 37 countries all over the world, a really Fleischman Memorial Lecture was given by Information on Clinical Trials 40 satisfactory figure in view of the emerging David Cella, Professor of Psychiatry and news updates on the flu pandemic the first Behavioral Sciences at Northwestern Educational Resources 43 days of May. The symposium was chaired by University Feinberg School of Medicine, Foundation Publications 47 Professor Nicholas Zoumbos, Head of the Evanston, Illinois, and was entitled Department of Internal Medicine and “Symptom and treatment burden: Effect on Contributions to the Foundation 48 Hematology at the University of Patras, and the quality of life.” Finally, the archeologist In Memoriam 49 whose main interest and involvement is the Professor Michael Petropoulos gave a very area of bone marrow failure syndromes and interesting lecture, presenting the Asclepius General Information 56 MDS in particular. Temples of Peloponnese and analyzed their MDS Practice and Treatment Survey 57 During the two and a half active days of significance as medical, social, and spiritual the symposium, 42 invited lectures were centers of the ancient times. The opening presented in 11 plenary sessions by ceremony ended with a reception in the distinguished expert speakers. Moreover, foyer of the Convention Center.

1 There were also some important participants. It became clear that even now, pathogenesis of MDS. Dr. G. Mufti reviewed novelties presented at this symposium. in the era of the very sophisticated the existing experience, supporting that all First, the Young Investigator Plenary Session diagnostic methods, morphology remains types of MDS share a more or less was introduced, in which the six better the cornerstone for diagnosis and prognosis prominent underlying immunopathogenetic original research abstracts, presented by of MDS. component. Dr. S. Nakao focused his investigators younger or equal to 35 years lecture on the role of the immune system in old, were presented. Indeed, there were six It became clear that even the pathogenesis of low-risk MDS. He very interesting presentations, all of which reported that about 20% of the patients were equally awarded. Second, a “Challenge now, in the era of the very with RA and RCMD, particularly those the Expert” session, chaired by Moshe sophisticated diagnostic with profound thrombocytopenia and low Mittelman and Constantinos Tsatalas, was bone marrow megakaryocyte count, bear organized for the first time. In this session, methods, morphology remains PNH+ cells. These patients should be four interesting case studies were the cornerstone for diagnosis distinguished and should not be treated with presented, with unique clinical features and and prognosis of MDS. chemotherapy or with hypomethylating courses, which flared up lively discussion agents but with immunosuppression, using with the audience. Third, for both poster ATG+cyclosporine-A. In support of the sessions there was a poster walk, chaired The Nursing Educational Program on above-mentioned data are the data from a by a symposium committee, which MDS, which was initially introduced at the Greek group from Athens (A. Efthimiou et al.), encouraged discussion on the presented 9th International Symposium on MDS in who found PNH+ cells in 11 out of 71 material and improved communication Florence, was successfully organized for patients with MDS. between presenters and other participants. the second time by the MDS Foundation Dr. Epling-Burnette et al. investigated the The poster committees evaluated all Nursing Advisory Board (see page 12).The relationship between treatment with ATG, posters and awarded the best poster of Nursing Program was arranged this time in peripheral blood lymphocyte subpopulations each area of interest of MDS. Finally, a parallel with the rest of the scientific and homeostatic T-cell proliferation. They Patient and Family Forum was organized for program of the symposium and was held in found that effector memory cells comprise the first time. This was a three hour two sessions, split into two consecutive the dominant T-cell population and CD8+ informative session, adapted for patients afternoons. The Nursing Program was T-lymphocytes predominate, with a high rate and non-health professionals in general, in organized and directed by Kathy Heptinstall, of homeostatic turnover. These cells are which the natural course, clinical features, and the availability of a concurrent directed by specific cytokines implicated in newer treatment modalities, follow-up translation into Greek gave the enthusiastic the pathogenesis of MDS and can be used in recommendations and guidelines, as well as group of 30–35 nurses the opportunity to the monitoring of response to various issues of psychological support and of attend the event. It appears that the Nursing immunomodulatory treatments. quality-of-life were analyzed. This forum was Program is going to be a standard part of Clonal expansion in MDS is at least in attended by approximately 70 patients and the educational program of every MDS part influenced by the interaction of the their relatives and/or caregivers, and was international symposium in the future. effector cells of the immune system and the particularly successful, in view of all the Following is a review of some of the dysplastic hematopoietic cells. Dr. A. Kondo questions which were addressed. In fact most important information which was et al. from Tokyo presented data showing some patients, unable to attend for various presented during the 10th International that B7-H1 co-stimulatory molecules, reasons, have asked to reorganize such an Symposium on MDS. expressed on blast cells of patients with informative patient-addressed forum. MDS, interact with their receptors (PD-1 The “Tito Bastianello Award,” which Approaching Immune molecules) on T-cells and induce T-cell launched in Florence in 2007 to support Pathogenesis and Other apoptosis. Blocking the B7-H1#PD-1 co- MDS research in memory of the Pathogenetic Aspects of MDS inhibitory pathway in co-culture experiments homonymous person who died of MDS, was The role of the immune system in the of MDS cell lines and normal T-lymphocytes given to all the presenters of the Young pathogenesis of MDS is evolving. Substantial resulted in increased T-cell proliferation Investigator’s Plenary Session. information on this issue was discussed and decreased apoptosis. Therefore, the Particularly interesting and once more during the 10th International Symposium of aberrant expression of B7-H1 molecules on very successful was the Morphology MDS. The first roundtable of invited MDS progenitors might represent a Workshop, chaired by John Bennett and speakers and many oral and poster mechanism of escape of immune surveillance Jean Goasguen and attended by about 150 presentations were dedicated to the immune and of clonal expansion.

2 These effector T-cells are mainly or exclusively distributed in the bone marrow and may not be found in the peripheral blood. Dr. F. Alfinito et al. from Naples showed that in the bone marrow of patients with low/intermediate-1 risk MDS adaptive immune effector cells and CD4+CD25high Foxp3+ cells (T-reg) are clustered and can be found in association with CD54+CD8+ T-lymphocytes. In this study, the proportion of marrow T-regs paralleled the IPSS score, and therefore this proportion could represent another prognostic factor for MDS. Another group from Tokyo (H. Tamura et al.) investigated the significance of the expression of WT1 mRNA and of anti-WT1 antibodies in patients with MDS and AML Employees and students of the University of Patras Dance Club. evolved from MDS. They found that WT1 various research studies, L. Chan et al. from in the progenitor cells of MDS patients. In mRNA levels were positively correlated with Toronto evaluated the reliability of this another presentation from Patras (D. Watson disease aggressiveness, the IPSS score, and technique and found that, although the et al.), the mean baseline DNA damage in negatively with the overall survival of intraexperimental variation is very low, peripheral blood cells detected with the patients; whereas levels of IgM- and IgG measuring the same person’s iROS levels in comet assay was found increased in two out anti-WT1 were positively correlated with consecutive days produces significant inter- of four patients with MDS. Moreover, the platelet count and survival. Therefore, anti- experimental variation, probably due to incubation of the cells with H2O2 resulted in WT1 immunotherapy might represent a form instability of the reagent. In another significant elevation of DNA damage indexes of targeted therapy for specific subgroups of presentation the same group found a very in MDS patients compared to controls. patients with MDS. strong correlation between the iROS levels The issue of cellular senescence as Finally, the group from Patras (E. Solomou, of peripheral blood lymphocytes with those possibly contributing to the pathophysiology N. Zoumbos et al.) investigated the induction of bone marrow lymphocytes and of CD34+ of MDS was approached in the invited of expression Th17 and Th1/17 cells in cells in normal subjects and in patients with lecture of A. Kimura who mentioned a recent peripheral blood mononuclear cells of low-risk MDS, but no correlation in patients finding of his group that BMI-1 expression of patients with MDS, following PHA stimulation. with high-risk MDS and AML, apparently due CD34+ cells is correlated to IPSS and may Th17 as well as Th1/17 cells were found to increased oxidative stress which occurs in represent a prognostic marker of disease significantly increased in patients with MDS the bone marrow of these patients. The progression. BMI-1 is a gene involved in the compared to controls. These CD4+ cell Patras group (G. Voukelatou et al.) measured RAS downstream signal, and its expression subpopulations are the IFN-α secreting iROS levels in 23 patients with MDS and 12 is important for the intensive cellular cells, through the activation of the matched controls, and correlated the results proliferation and self-renewal of the cell. transcription factor T-bet, and may be with the amount of modified proteins, Mutations of the BMI-1 gene are associated implicated in the pathogenesis of MDS. estimated by OxyBlot and with the levels of with a phenotype of delayed or arrested Regarding other pathogenetic aspects of the antioxidant enzymes catalase and Mn- proliferation without block of differentiation, this disease, at least four symposium superoxide dismutase. They found increased which is a phenotype of cellular senescence. presentations focused on the role of iROS levels in both low- and high-risk MDS In a presentation of the Patras group (I. oxidative stress, expressed as levels of patients and concurrently higher amounts of Constandinidou et al.), although they did not intracellular Reactive Oxygen Species modified proteins from oxygen free radicals. find differences in BMI-1 expression on (iROS), as a mechanism of inducing cellular Interestingly, the expression of the two CD34+ cells of patients with MDS, they did senescence and genomic instability, and antioxidant enzymes were found decreased find higher levels of p16 and of hence favoring the development of in the CD34+ cell compartment of the phosphorylated p53 in low-risk MDS, cytogenetic abnormalities and disease patients, a finding implying antioxidant suggesting that cellular senescence may evolution. Since measurement of iROS by enzyme insufficiency as an additional contribute to the ineffective hematopoiesis flow cytometry is used more and more in mechanism of generation of oxidative stress of MDS.

3 In another presentation the C3ORF9 gene encoding X010 protein was studied on 131 patients with various MDS subgroups and was found over expressed in patients with RA, RAEB and RAEBt, downregulated in CMML, and normal in RARS. The significance of these findings is as yet uncertain. H. Karlic et al. from Vienna investigated the function of estrogen receptor (ER), osteocalcin (OCN) and fat metabolism genes in 23 patients with MDS, and three matched controls. They reported a significant inhibition of all studied gene expression, due to hypermethylation, in 15 of the patients with less aggressive MDS, but not in the seven patients with Kathy Heptinstall (far right), MDS Foundation Operating Director, with attending nurses. RAEB and in two with AML, also studied. The interpretation of these findings is that genes of their bone marrow cells, since these are a tumor-suppressor gene, and its mutations regulating lipid and bone metabolism, also strongly antiapoptotic metabolic regulators. occur in a CD34+CD38- cell and favor affecting the apoptotic process, are altered It is evident that many aspects of the various evolution-promoting events. Other in many patients with MDS, and this lipid- and other metabolic pathways have presentations have investigated different should be further investigated. A similar not yet been clarified or even investigated in aspects of disease initiation and progression. approach was presented by P. Matsouka et MDS, and their study may help the The issue of telomere length and of al., who investigated the serum profile of clarification of some important clinical telomerase activity and its possible metabolism-related cytokines in 72 patients features of these syndromes. pathogenetic role in disease evolution of with MDS. Their results demonstrated MDS has been reviewed in a nice lecture by significantly elevated serum levels of New Possible Molecular Neal Young and has been investigated by osteocalcin and adiponectin and significantly Targets in MDS three groups, leading to an equal number of decreased levels of leptin, insulin and IGF-1, The continuous progress in the interesting presentations. Professor Young compared to serum levels of 41 normal understanding of the molecular mechanisms, with his vast experience on aplastic anemia controls, whereas levels of grelin and PTH which are implicated in the pathogenesis of reported that although response to did not differ significantly between the two MDS, may identify new molecular targets for immunosuppressive treatment of patients groups. The low levels of IGF-1 and leptin in the design of tailored therapies, addressed with aplastic anemia is not influenced by patients with MDS were considered to be in to those patients who might carry a specific telomerase activity and telomere length, accordance with the high rate of apoptosis molecular marker. One such target might relapse rate and clonal evolution are be TET2 gene. Four presentations in the significantly more common among patients 10th International Symposium of MDS with shortened telomeres and impaired investigated the mutational status of TET2 telomerase activity. A Greek group from in MDS. In one presentation by the Groupe Thessaloniki (E. Verrou et al.) investigated Francophone des Myelodysplasies, 59 the expression of hTERT mRNA variant mutations of this gene were identified in 46 transcripts A and B in 40 patients with MDS out of 206 tested patients, more commonly and 17 with AML. They found alternatively among RAEB-1 patients, and in accordance spliced hTERT mRNA variants, especially the to that study a group from the Netherlands Adel isoform in patients with low-risk MDS, and Belgium found mutations of this gene in implying a reduction of telomerase activity 26% of 102 patients tested. In another work and consequently increased genomic from Cleveland, mutations of the TET2 gene instability. A group from Ukraine (D. Bazyka et were associated with proliferative features of al.) reported significantly lower telomere the MDS, CMML, or AML evolved from MDS, length and increased rate of apoptosis in 23 but no prognostic impact was found. patients with RA, compared to controls, Dr. John Bennett, MDS Foundation Chairman According to another French group, TET2 is whereas the Czech group (H. Cechova et al.)

4 reported that treatment with hypomethylating ligase, and these mutations were associated that MSC of these patients contain agents increased significantly telomere with poor prognosis of the patients. The increased mRNA levels of PDGFα, TNFα length and telomerase activity. attenuation of the activity of proteasome was and IL-32. mRNA levels of the latter two One feature of leukemic cells might be the interpreted as a mechanism possibly cytokines, as well as of FGF4, were modulation of some nuclear receptors. A contributing to disease progression in MDS, found particularly elevated among patients group from Toronto (C. Ichim et al.) found that, by preventing the elimination of abnormal, with del-5q, thus explaining the development by up-regulating the orphan nuclear receptor mutated or oxidized proteins and prolonging of a proapoptotic and thrombopoietic NR2F6 in a chimeric mouse model, the the activity of activated tyrosine kinases, microenvironment, which characterizes this animals exhibited morphological features of thus enhancing leukemic transformation. chromosomal abnormality. The Czech group myelodysplastic syndromes, and a significant A cooperative Greek group (I. Dahabreh has analyzed morphologic and prognostic proportion of them developed acute leukemia. et al.) investigated the frequency of JAK2 aspects of dysmegakaryopoiesis and Since the expression of this receptor has been V617 mutation among 265 patients with dyserythropoiesis among patients carrying found to be deregulated among patients with MDS and found that only nine patients (3.4%) del-5q in their karyotype, whereas L. MDS and CMML, one could anticipate that carried the mutation. The frequency was Napoleone et al. presented a familial blocking this nuclear receptor might result in higher among patients with del-5q (8%), occurrence of MDS and del-5q. the prevention of the delay of leukemic and patients carrying this mutation had transformation in patients with MDS. higher neutrophil and platelet count, but no The impressive results of Another well-recognized feature of other difference in any morphologic or treatment with lenalidomide the leukemic cells is survival advantage prognostic feature was noted. Finally, a and resistance to chemotherapy-induced Swedish group, investigating mechanisms in patients with low-risk apoptosis. This is accomplished among of disease progression in 32 patients with MDS, and particularly in others and by the upregulation of HSP90, and del-5q, found that seven out of nine patients, at least in solid tumors by the overexpression whose disease evolved either as AML or with those carrying the del-5q of Focal Adhesion Kinase (FAK). By evaluating the acquisition of additional chromosomal chromosomal abnormality, has 170 patients with MDS at diagnosis, a French abnormalities, expressed p53 and aberrant stimulated many investigators group (L. Campos et al.) presented data of cytoplasmic nucleophosmin at the time of increased expression of HSP90, FAK, initial diagnosis; therefore, they suggest the and research groups to clarify phosphorylated FAK and Akt in mononuclear expression of any of these two markers in the underlying pathophysiology these patients is an adverse prognostic factor. cells and CD34+ cells of patients with RAEB, of this specific chromosomal as compared to patients with RA and CMML. Interestingly, the inhibition of HSP90 in vitro Understanding the abnormality and the Pathophysiology of del(5q) by 17-AAG was associated by activation of mechanism of action of apoptosis of these cells. and the Mechanism of Action lenalidomide in these patients. In two other presentations the of Lenalidomide proteasome activity was found to be The impressive results of treatment with decreased in both CD34+ and CD34- cells lenalidomide in patients with low-risk MDS, Dr. Wobus et al. from Dresden reported of patients with MDS, as compared to and particularly in those carrying the del-5q that although the in vitro treatment of MSC controls. This might be attributed to chromosomal abnormality, has stimulated with lenalidomide did not alter the mutations of the c-Cbl, an E3 ubiquitin many investigators and research groups to immunophenotypic profile of these cells, it clarify the underlying pathophysiology of this did increase the cobblestone areas of specific chromosomal abnormality and the hematopoietic stem cells on MSC layers and mechanism of action of lenalidomide in increased the production of IL-6 and IL-8. these patients. During the 10th International These effects were observed in cell culture Symposium on MDS, there were many of normal controls. informative presentations on this topic. In another presentation from Toronto The group from Salamanca-Spain (C. (R. Shapiro et al.), cyclooxygenase-2 and Santamaria et al.), which recently reported CD31 expression, reflecting micro vessel the existence of cytogenetic aberrations in density, were both found elevated in the mesenchymal stem-cells (MSC) of patients bone marrow of patients with del-5q, in with MDS, presented new data demonstrating contrast to other WHO types of low-risk

5 MDS. This feature may represent an of 73 patients with MDS, 49 with del-5q treatment may offer the patients much more additional mechanism of success of alone, 12 with additional abnormalities over than merely removing the excess of iron lenalidomide treatment in this particular del-5q, 6 with normal karyotype and 6 from the tissues. The issue of iron chelation group of patients. with other karyotypic abnormalities not was abundantly discussed during the 10th The group from Karolinska Institute of including del-5q. After a median follow-up of International Symposium on MDS. There Stockholm studied the adhesion properties 15 months, 48 of the 67 evaluable patients was a round table of invited speakers of CD34+ cells from patients with del-5q to demonstrated a favorable response, which dedicated to current questions and answers a murine stromal cell line and compared was CR in 39 patients. CR was obtained by on chelation therapy in MDS. them with those of normal CD34+ cells. The 33 of 49 patients with del-5q alone and by 5 out of 12 patients exhibiting additional CD34+ cells of patients with del-5q It appears that effective iron exhibited increased adhesiveness to abnormalities over del-5q. Of interest, bone stromal cells and a consequent decrease marrow lymphoid nodules, which were chelation treatment may offer rate of apoptosis, which were abrogated by present in 33 patients before treatment, the patients much more than disappeared in 18 out of 21 favorably the addition of lenalidomide or of merely removing the excess recombinant SPARC. Therefore, it appears responded patients, suggesting that their that decreased expression of SPARC leads presence might be associated with a of iron from the tissues. pathogenetic role in these patients. The to increased adhesion of del-5q CD34+ The issue of iron chelation progenitors to their microenvironment and French study (M. Sebert et al.) is also a may explain their growth advantage over retrospective analysis of 75 patients with was abundantly discussed normal CD34+ cells. Lenalidomide was low- and intermediate-1 IPSS, belonging to during the 10th International all WHO subtypes, from del-5q to RAEB-1. capable of reversing this growth advantage Symposium on MDS. of the clonal cells at least in part by A favorable response was achieved by 49 increasing SPARC expression. (65%). About 80% of the patients exhibited grade 3–4 cytopenias, leading to transient There were five presentations analyzing Dr. L. Chan from Toronto presented the discontinuation of lenalidomide in almost various aspects of treatment with consequences of chronic iron overload on half of them. Twelve patients discontinued lenalidomide in patients, mainly with low- normal hematopoiesis, using a mouse the drug prematurely, and three patients risk MDS. The preliminary results of the model in which the animals were injected (two with RAEB-1 and one with additional prospective single-arm phase II Japanese increasing iron load for 21 consecutive days. abnormalities over del-5q) evolved to AML. study (H. Harada et al.) designed for Three months later mice exhibited Finally, the German study (A. Giagounidis et patients with del-5q showed that all 11 macrocytosis and increased levels of intra- al.) focused on the duration of response patients responded favorably, with complete cellular Reactive Oxygen Species (ROS) in after lenalidomide discontinuation. Among cytogenetic response in seven out of ten their lin-CD45+ bone marrow cells. The eight patients who discontinued lenalidomide patients. According to the Italian same group demonstrated that the after achieving remission, four continue to cooperative study (E. Oliva et al.) designed intracellular ROS content of CD34+ bone remain in remission 7 to 54 months after for patients with del-5q alone and focused marrow cells from 34 patients with MDS and drug withdrawal, while even those who on efficacy and quality of life among 13 heavy iron overload was strongly correlated stopped lenalidomide before the achieve- evaluable patients, Hb response was with serum ferritin levels. The correlation ment of cytogenetic remission continued to achieved by six, of whom five became was stronger in patients with RAEB, whereas be in hematological remission for more than transfusion-independent. Since treatment no correlation was found in patients without 12 months. schedule was the continuous daily iron overload. This work confirmed that administration of 10 mg of lenalidomide, 10 simply evaluating serum ferritin levels is a Iron Chelation in MDS: patients required drug discontinuation and sufficient tool to monitor more complicating dose reduction. The same group has More Than Just Removing the parameters of iron status in the body and planned to investigate the gene expression Excess of Iron From the Patient pretty nicely reflects the severity of iron profile before and after lenalidomide Over the past few years it has become toxicity at the cellular level. treatment, but comparative results are not increasingly evident that reducing iron Dr. Ohyashiki et al. from Tokyo reported yet available. The Greek cooperative study overload in regularly transfused patients the effects of in vitro treatment with (A. Symeonidis et al.-Hellenic MDS Study with MDS represents a major issue of the deferasirox on three human myeloid leukemia Group) is a retrospective analysis of the supportive care of the patients. However, it cell lines as well as on peripheral blood efficacy and safety of lenalidomide in a cohort appears that effective iron chelation mononuclear cells from four patients with

6 AML. They found an enhanced expression of status. Moreover, a group from Prague Abstracts Now Available! REDDI and its downstream protein Tuberin (J. Krijt et al.) presented data, demon- (TSC2), which down-regulates the mTOR strating that iron overload opposes the pathway. As a result, the S6 ribosomal erythropoietic stimulatory effects induced protein was found significantly repressed. by rh-Epo through the inhibition of These findings imply that iron chelation hepcidin down-regulation. Thus it appears may inhibit leukemic cell growth. that iron chelation treatment may indeed prevent, at least to some degree, disease The Turin group of Prof. G. Saglio has progression towards a more aggressive presented new data on NF-κB inhibition in form of MDS or AML. mononuclear cells of patients with MDS and of two leukemic cell lines induced by The abstracts of the 10th International deferasirox, but not by the other two iron Symposium on MDS published by Leukemia Research are now available upon request by chelators deferoxamine and deferiprone. contacting the MDS Foundation at 800-MDS- The increased activity of NF-κB in 0839. A DVD-ROM of selected presen- mononuclear cells of patients with MDS tations from this symposium will be was not correlated with the iron load available soon.

MDS IRON-OVERLOADSUBMITTED DETECTION: FROM USA INSIGHT SURVEY

MIDIS Reveals Bulgaria Austria Key Thoughts on UK Belgium Croatia Switzerland Czech Rep. Managing Iron Sweden Denmark Overload in MDS Spain Estonia Finland We are pleased to share the results from France MIDIS (MDS Iron-Overload Detection: Insight Slovakia Survey)—the first European survey among Serbia haematologists on the subject of iron Romania Germany toxicity in myelodysplastic syndromes Portugal Greece (MDS). 60–80% of patients with MDS will Poland Italy Hungary develop symptomatic anaemia during the Norway Malta Lithuania course of their disease, and 80–90% of Netherlands Macedonia these will benefit from red blood cell transfusions to improve their haemoglobin Figure 1. European Pie. Countries of residence of the 338 physicians who participated in MIDIS. levels. Despite the benefits that patients receive from regular transfusions, those who of a range of educational initiatives aimed at — from 27 European countries (Figure 1). become dependent on transfusions will improving detection and treatment of iron- Together, the respondents were a highly develop iron overload, known to cause overloaded patients with MDS. skilled group of physicians; 26% had progressive damage to the heart, liver and The 15-minute MIDIS survey, which more than 25 years’ experience of endocrine organs if not adequately treated comprised 33 structured and five open- treating patients. with iron chelation therapy. ended questions, was translated into The results showed that the majority of MIDIS is a joint initiative by the European Dutch, French, German, Italian, Spanish respondents thought that detecting iron School of Haematology, the MDS Foundation and Swedish. It was initiated at the 2008 overload in transfusion-dependent patients and Novartis Oncology, who would like to thank annual meeting of the American Society with MDS is important (46% replied that this all the physicians who took part in the survey. of Hematology, and was promoted through was ‘very important’ and 27% thought it It was initiated to gain helpful insights into e-mails, letters and flyers distributed at was ‘important’). They indicated that one of what haematologists across Europe perceive conferences, as well as links via the MDS the key barriers to detecting iron overload to be the barriers to the optimal detection Foundation and European School of Haema- was levels of serum ferritin (a common test and management of iron toxicity in patients tology websites. The survey was completed for iron overload) not being regularly with MDS. MIDIS will lead to the development by 338 physicians — mostly haematologists monitored in transfusion-dependent patients.

7 Most physicians also felt that treating iron Does not prevent (at all) (Strongly) prevents overload was ‘very important’ or ‘important’. (score 1–2) Score 3–5 (score 6–7) 90% of the physicians said they treated their 12345 6 7 Mean of iron-overloaded patients with MDS with iron each barrier chelation therapy, and a total of 38% of the Patient is aged 20 31 50 4.9 transfusion-dependent patients they saw in 85 years their clinics were chelated. Dr Aristoteles Patient is aged 34 48 19 3.5 Giagounidis, of St. Johannes Hospital, 75–84 years Duisburg, Germany, and advisor to the MDS Patient is aged 69 28 3 2.1 Foundation, said “this figure of 38% is 65–74 years indicative of the proportion of patients who Patient is aged 89 7 4 1.6 are candidates for iron chelation therapy, 55–64 years and reflects physicians’ active iron chelation treatment strategy.” 0602040 80 100 MIDIS demonstrated that the key barriers Percentage of physicians to treatment for the remaining patients were limited patient life expectancy (<1 year) and Figure 2. Age as a Barrier to Iron Chelation Therapy. MIDIS showed that patient age ≥75 years prevented physicians from initiating iron chelation therapy. older patient age (especially ≥ 85 years). While limited life expectancy is in line with 20 recommendations made by various European guidelines for the treatment of MDS, the guidelines do not recommend an 15 age range for patients who are most likely to benefit from iron chelation therapy. The MIDIS results conveyed that patients aged 10 75 years or older are less likely to be chelated than younger patients (Figure 2). Number of patients 5 The Düsseldorf MDS registry cites the median age of patients at diagnosis of MDS as 72 years (Figure 3). Experts agree that 0 21 37 47 56 62 68 74 80 86 92 the prognosis and physiological condition Age at diagnosis (years) of the patient should be assessed rather than the chronological age in terms of Reproduced with permission. Germing U, et al. Haematologica. 2004;89:905-910. Obtained from Haematologica/the Hematology Journal website http://www.haematologica.org with kind permission of the Ferrata Storti foundation, Pavia, Italy. treatment selections. The MIDIS study revealed that patients Figure 3. Age at Diagnosis. The age distribution of 308 patients with MDS from the Düsseldorf were selected to receive iron chelation MDS Registry. therapy based on their serum ferritin level, the rate of increase of their serum ferritin Markers for initiating Percentage of physicians who Iron chelation level, or the number of red blood cell units or iron chelation therapy considered each marker important therapy was initiated transfusions that the patients had received at these mean values: (Figure 4). Candidacy for allo-stem cell- Serum ferritin level 92% 1130 ng/mL transplantation was also a strong trigger for Number of blood initiating iron chelation therapy. These 56% 21 blood units/bags markers are also in line with the MDS units/bags transfused treatment guidelines that have been Number of transfusions 41% 18 transfusions published by the MDS Foundation. In May 2009, results from the MIDIS Rate of increase in 33% study were presented at the 10th serum ferritin level International Symposium on Myelodysplastic Syndromes, which took place in Patras, Figure 4. Triggers for Iron Chelation Therapy. Each marker served as an indicator of when to Greece, where they were well received. initiate iron chelation therapy.

8 Foundation Plans International Symposia Through 2013 The MDS Foundation has approved applications for the next two International Symposia. These symposia are scheduled for 2011 in Edinburgh, Scotland, and 2013 in Berlin, Germany. PLAN TO ATTEND The 11th International Symposium on Myelodysplastic Syndromes MAY 19–22, 2011 • EDINBURGH, SCOTLAND

Eleventh International Symposium: Twelfth International Symposium: Spring 2011 Spring 2013 Edinburgh, Scotland Berlin, Germany Sponsor: David T. Bowen, MD Sponsor: Wolf-Karsten Hofmann, MD, PhD

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The MDS Foundation is a multi disciplinary, international organization devoted to the prevention, treatment, quick, frequent answers to one simple About the Foundation and study of the myelodysplastic syndromes. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases. The Editor’s Desk If you wish to support the work of the Foundation in the battle against myelodysplastic syndromes, question. Follow us on Twitter at http://twitter.com/MDSFoundation to start Funding the Foundation please remember us and consider donating all year long. All donations are tax-deductible. Patient Information MAKE A DONATION NOW.

Centers of Excellence Upcoming U.S. MDS Patient & Family Forums receiving the MDS Foundation’s tweets. Int’l Patient Registry Friday, November 12, 2009 Boston, MA Int’l Research Updates Guest Speaker: Dr. Richard Stone, Dana-Farber Cancer Institute

Friday, November 20, 2009 Contact the Foundation Cleveland, OH Guest Speaker: Dr. Jaroslaw Maciejewski, Cleveland Clinic Foundation Taussig Cancer Center Clinician Resources SO YOU HAVE MDS WHAT NOW? We hope to see you on the web! Friday, December 18, 2009 Employment Bill Bryant, MD Lake Success, NY Guest Speaker: Dr. Steven Allen, North Shore University Hospital Links Call 1-800-MDS-0839 or email [email protected] to register for this free event. WHAT CAUSES MDS?

Upcoming International MDS Patient & Family Forums Friday, 20 November 2009 BE A Cambridge BONE MARROW OUR SITE TO SEE! DONOR! Guest Speaker: Prof. Alan Warren, Addenbrookes Hospital www.mds-foundation.org

9 Drug News

ANNOUNCEMENTSUBMITTED FROM FROM MDS USA FOUNDATION The MDS Foundation Says patients. VIDAZA was previously listed as the Because these latest guidelines for AML National Comprehensive first “preferred” treatment for high-risk are very specific as to subsets of patients Cancer Network Recommends patients with MDS. including adverse features, chromosome New Treatments For Acute “These are important new treatment abnormalities and co-morbidities, the MDS Myeloid Leukemia options for AML where the majority of Foundation believes it is especially important patients are elderly and cannot tolerate for patients to seek care from knowledge- New Options Added For intense chemotherapy,” said Kathy Heptinstall, able specialists and for specialists to be Patients Over 60 Years Old Operating Director of the Myelodysplastic conversant with the details of the NCCN Crosswicks, NJ (October 2009) – Syndromes Foundation. “These guidelines recommendations. The Myelodysplastic Syndromes (MDS) reflect the progress being made in treating MDS is a malignant condition of cells in Foundation says updated guidelines from both AML and MDS and on behalf of our the bone marrow. Patients require blood the National Comprehensive Cancer patients we are encouraged to see these transfusions that can lead to iron overload, Network indicate new, low-intensity developments put into practice.” and the condition can progress to AML a treatments are now recommended for older The National Comprehensive Cancer serious form of leukemia. Nearly 13,000 patients with acute myeloid leukemia (AML), Network (NCCN) develops evidence-based AML patients are diagnosed each year in the an aggressive form of leukemia that in many treatment guidelines from experts in each United States. Median survival is less than cases progresses from MDS. The updated field of cancer based on published studies. one year. ® ® guidelines add VIDAZA and DACOGEN as In addition to the drug therapies, guidelines More information about the guidelines low intensity treatment options for AML for AML patients who are eligible for stem can be found on the NCCN website or ® cell transplants now say umbilical cord blood patients over 60 years old. Clolar was also through the MDS Foundation. listed as a possible intermediate intensity can be used for patients who do not have an treatment option for certain subsets of these appropriate donor available.

MDS PRACTICESUBMITTED AND TREATMENT FROM USA SURVEY

MDS Practice and Treatment Survey The MDS Foundation recognizes that data on many aspects of MDS worldwide is sketchy or nonexistent. While individual investigators have developed databases to COMPLETE THE track MDS within their individual sites or working groups, that information is not located within one easily accessible database. SURVEY TODAY! (BEGINS ON PAGE 57) To assist in the development of useful information, the Foundation has recently initiated the first Patient Registry and data from the Foundation’s Centers of Excellence are currently being entered. Since it will be some time before these data are mature and usable, the Foundation has attempted to design a survey that we hope will assist in describing some of the issues related to MDS worldwide as well as the treatments being utilized in this disease. A pilot of this survey has already been completed with some selected Centers of Excellence. While we know that this information is, in most instances, based on subjective criteria, it can assist in identifying educational and research opportunities in the near term and until more accurate data are available. The results of this expanded survey will be shared with each of our Centers of Excellence and used by the Foundation to assess new educational and research opportunities. Please assist us by completing this brief survey online or in this issue of The MDS News. Go to www.mds-foundation.org and click on the Physician or Nursing Practice & Treatment Survey. Surveys are available online in the following languages: Spanish, Italian, German, and Dutch. Thank you in advance for your consideration in completing this form.

10 Young Investigator’s Award

Raising The causes of these syndromes are identified as Excellence to submit their proposals. Four soon as possible. To ensure that this future years ago, the Foundation initiated this Next Generation generation of researchers flourishes, the series of grants; two awards will be made of MDS Investigators MDS Foundation awarded two fellowships of this year, and subsequent awards will be $50,000 each in 2009 (see below). granted annually. MDS is an enigmatic disease that is not The Foundation is dedicated to furthering On December 4, 2009, a formal awards yet well understood by scientists, physicians, the research into MDS and invited young ceremony will be held in conjunction with the and researchers. It is essential to develop the investigators (under 40 years of age) from American Society of Hematology’s annual new generation of researchers so that the institutions that form our MDS Centers of meeting in New Orleans, Louisiana.

THE YOUNG INVESTIGATOR GRANT PROGRAM FOR FELLOWS IN HEMATOLOGY In December 2005 The Myelodysplastic Syndromes Foundation, Inc., initiated a series of grants “The Young Investigator’s Grant Program for Fellows in Hematology.” These awards are granted annually. The Grant Review Committee selected Andrew Finch’s grant submission entitled “The Role of p53 Pathway in the Pathogenesis of Shwachman Diamond Syndrome” and Ramon Tiu’s submission entitled “TET2 Mutations as Marker of Epigenomic Instability in MDS: Therapeutic Implications” as recipients for the 2010 Young Investigator Grants.

Andrew John Finch, PhD Ramon Tiu, MD University of Cambridge Cleveland Clinic Foundation Cambridge, UK Cleveland, Ohio USA

The Foundation is dedicated to furthering the research into MDS and invites Young Investigators (under the age of 40) to submit either basic or clinical research proposals into the causation, epidemiology, molecular biology, cytogenetics, morphology, prognosis, or management of the Myelodysplastic Syndromes.

THE YOUNG INVESTIGATOR GRANT PROGRAM is supported by

11 Meeting Highlights and Announcements

On behalf of the MDS Foundation and our Board of Directors, thank you for joining us for our recent Satellite Symposia:

MDS MISSION FOR NURSING EDUCATION

THE 34TH ANNUAL CONGRESS OF THE patients face in psycho-social and adverse ONCOLOGY NURSING SOCIETY (ONS) events, and quality of life. The need to track patients effectively formed an interactive Practical Therapeutic component of the symposium. Options & Approaches: Our distinguished faculty included: Keeping MDS Patients Erin Demakos, RN, CCRC Mount Sinai School of Medicine on Track (Case-Based) New York, NY Sandy Kurtin, RN, MS, AOCN, ANP-C San Antonio, Texas For a copy of the DVD-ROM, which contains all of April 30, 2009 Arizona Cancer Center the slide presentations from this session, please Tucson, AZ contact the MDS Foundation at 1-800-MDS-0839. The MDS Foundation was pleased to Jean Ridgeway, RN participate in the ONS annual meeting held University of Chicago Medical Center 10TH INTERNATIONAL SYMPOSIUM ON MDS this year in San Antonio, Texas, where we Chicago, IL presented the Foundation’s third annual Erik Aerts, RN MDS Nursing symposium in conjunction with ONS. Our University Hospital Zürich, Switzerland Satellite Breakfast Symposium —Practical Education Sessions Topics included: Therapeutic Options & Approaches: Keeping Held at the 10th Int’l ■ MDS Patients on Track (Case-Based) — was Advances in MDS: Clinical and Symposium on MDS held on April 30, 2009, at the Marriott San Research Update ■ Antonio Riverwalk Hotel. Treating Low-Risk Patients Patras, Greece (Case Presentation) At least 195 nurses participated in our May 7–8, 2009 breakfast symposium. This program centered ■ Utilizing Decitabine Effectively This two-day nursing education symposium on case-based presentations and included ■ Utilizing Azacitidine Effectively held May 7–8, 2009, at the University of cases for both low- and high-risk MDS, ■ Transplant as a Therapeutic Option Patras provided a definitive overview of MDS transplant patients, and provided key in Young MDS Patients: Nursing as a disease, new information regarding information on dealing with the issues Considerations quality-of-life in MDS patients, resources that are available to nurses and their patients, new definitions and research in morphology and cytogenetics that are important in the evolution of the prognostic scoring systems (IPSS and WPSS), treatment strategies, and drug therapy, as well as the first look at a unique tool for online tracking of MDS patients. At the conclusion of this program, the participants were able to understand MDS as a disease, comprehend the issues surrounding the new treatments for MDS, discuss nursing strategies to help MDS patients understand treatments, increase compliance, and manage side effects of treatments; understand quality-of-life issues facing MDS patients and their caregivers/

Photo courtesy of The Oncology Nurse and American Photography and Video. American Photography and The Oncology Nurse and Photo courtesy of family; and understand the resources Peggie Aaron, Carol Duryea, and Deborah Murray greet visitors at the MDS Foundation booth available to help MDS patients and provide in San Antonio. that information to patients and families.

12 8:45 – 9:30 pm DINNER SYMPOS I UM David Cella, PhD EFFECTIVE THERAPEUTIC What is the Patient’s Reality? DECISION MAKING IN MDS: The View from the Other Side IMPROVING PATIENT OUTCOMES LEARNING AND QUALITY OF LIFE OBJECTIVES THE MDS FOUNDATION PRESENTS At the conclusion of this activity DINNER SYMPOS I UM participants will be able to: FRIDAY, DECEMBER 4, 2009 EFFECTIVE THERAPEUTIC ■ Discuss the most current DECISION MAKING IN MDS: 6 PM – 9:30 PM information on MDS therapy IMPROVING PATIENT OUTCOMES Ernest N. Morial Convention Center and tracking, diagnostic/ AND QUALITY OF LIFE New Orleans, Louisiana prognostic system updates, and Dinner will be served from 6 to 6:30 pm the state of disease knowledge DECEMBER 4, 2009 Rooms 270–282 6 PM – 9:30 PM ■ Symposium: Auditorium B/C Utilize updated WHO Class- Ernest N. Morial Convention Center ification and IPSS Prognostic New Orleans, Louisiana THIS IS A FRIDAY SATELLITE SYMPOSIUM PRECEDING THE 5 1ST ASH ANNUAL MEETING systems to effectively classify Seating will be on a first-come, and stratify patients first-served basis. by the audience and provide them with the ■ Understand the potential for opportunity for challenging discussions with VISIT THE MDS FOUNDATION BOOTH: #214 improved outcomes for MDS the experts and other participants regarding patients with effective thera- options in treatment and the potential effects THIS SYMPOSIUM WILL BE AVAILABLE ON CD-ROM ON DECEMBER 6TH AT THE MDS FOUNDATION BOOTH. peutic choices on patient outcomes. ■ Utilize therapies approved for MDS more effectively FACULTY AMERICAN SOCIETY OF HEMATOLOGY ■ Understand the need for effective tracking Alan F. List, MD, Chair H. Lee Moffitt Cancer Center PLEASE PLAN TO ATTEND! of clinical variables, transfusions, and therapy to monitor changes in MDS patients and Research Institute, Tampa, Florida AGENDA ■ Discuss the potential for improved quality John M. Bennett, MD 6:00 – 6:30 pm of life in MDS patients due to improved University of Rochester Dinner clinical knowledge Rochester, New York 6:30–6:45 pm Alan F. List, MD, Chair PROGRAM OVERVIEW David Cella, PhD Northwestern University Welcome and Introduction, This program will provide participants with the Feinberg School of Medicine Program Goals and Objectives opportunity not only to learn about the most Chicago, Illinois recent changes to the scientific knowledge of 6:45 – 7:15 pm John M. Bennett, MD MDS but to match their clinical knowledge of H. Joachim Deeg, MD Evolution in the Prognostic Systems in MDS with that of a panel of experts in MDS Fred Hutchinson Cancer Research Center MDS: What Does that Mean in Terms of diagnosis, therapy, and quality of life.Accurate University of Washington School of Medicine Diagnosis and Staging? diagnosis, stratification of MDS patients, Seattle, Washington treatment choices, and assessment of 7:15 – 7:45 pm Moshe Mittelman, MD Moshe Mittelman, MD therapeutic results (including quality of life Anemia – How Do You Treat It? Sackler School of Medicine issues) provides everyone involved in treating The Low-risk Patient at Risk Tel-Aviv Sourasky Medical Center MDS, including this “Expert Panel”, with for Rapid Progression Tel-Aviv, Israel continuous challenges to optimization of 7:45 – 8:15 pm Lewis R. Silverman, MD outcomes. The Expert Panel will present a Lewis R. Silverman, MD High-risk MDS: Traditional Treatments series of “real life” cases to the attendees Myelodysplastic Syndrome Program and Advanced Therapeutic Options coupled with brief scientific updates that may Myeloproliferative Disease affect the therapeutic choices of the Clinical Research Consortium 8:15 – 8:45 pm H. Joachim Deeg, MD participants. Verbal interaction and electronic Mount Sinai School of Medicine Issues in Transplant: Early versus Late decision making will allow for full participation New York, New York

13 EUROPEAN HEMATOLOGY ASSOCIATION ■ RARS-t: Issues in Management and Treatment Therapeutic Decision Mario Cazzola, MD Making in the ■ Innovative Management of INT-1 Treatment of MDS: David T. Bowen, MD ■ Effective Therapeutic Choice in Challenging the Experts High-risk MDS Internationales Congress Centrum Pierre Fenaux, MD ■ The Role of Induction Berlin, Germany The International Congress Center, Berlin, June 4–7, 2009 Germany served as the venue for EHA 2009. Chemotherapy in High-risk MDS Theo J.M. deWitte, MD, PhD The Myelodysplastic Syndromes Foun- This educational video will be available to ■ Reframing Treatment Schema dation presented its fourth adjunct audiences both via our educational website David T. Bowen, MD symposium at the 14th Congress of the and on DVD for continued use. Translations of

European Hematology Association in Berlin. educational materials in Czech, Dutch, French, S AT E L L I T E SY M P O S I U M The symposium was greeted by standing German, Greek, Hebrew, Hungarian, Italian, Therapeutic Decision Making room only, and 1000 copies (on DVD-ROM) Japanese, Polish, Portuguese, Romanian, in the Treatment were distributed on Friday and Saturday of Spanish, Swedish, and Turkish were also of MDS: the EHA meeting. The expert panel presented provided free of charge at our booth. brief overviews of “real life” cases and only Agenda Challenging the most recent treatment advances. Verbal the Experts ■ 4 June 2009 • Berlin, Germany interaction and electronic decision making Introduction allowed for full participation by the audience David T. Bowen, MD, Chairman ■ and provided them with the opportunity for Treating Low-risk MDS: For a copy of the DVD-ROM, which contains all of challenging face-to-face discussions with Evidence-based Therapy the slide presentations from this session, please the experts and other participants. Moshe Mittelman, MD contact the MDS Foundation at 1-800-MDS-0839.

5TH INTERNATIONAL CONGRESS ON MYELOPROLIFERATIVE DISEASES AND MYELODYSPLASTIC SYNDROMES 5th International Guided by the expertise of the leaders in the fields of molecular biology, pathology, Congress on immunology, and translational and clinical Myeloproliferative research, this Congress allowed attendees the forum to update their knowledge in the Diseases and MDS field, confirm their current practices and receive valuable take-home information on New York, NY exciting new screening and staging November 5–7, 2009 modalities, management approaches, and The 5th International Congress on emerging treatment options. Myeloproliferative Diseases and Myelodys- John M. Bennett, MD and Alan F. List, Nancy Mrzljak and Audrey Hassan discussing plastic Syndromes was held on November MD served as chairmen of the session on the Foundation with a congress attendee. 5–7, 2009, just across the river from MDS. Dr. Bennett is the chairman of the Neal S. Young, MD; Current treatment, Manhattan at the New York Marriott at The MDS Foundation and Dr. List serves as a including hypomethylating agents by Alan Brooklyn Bridge in Brooklyn, NY. Since the member of the Foundation’s Board of F. List, MD; New drugs in MDS – Treatment inaugural Congress in 2001, this meeting Directors. The scientific symposium of iron overload by Gail J. Roboz, MD; has grown to nearly 600 attendees and has included the following topics: Which transplant and when for patients become one of the premier forums for Classification, morphology, and patho- with MDS? by Richard E. Champlin, MD; discussion on the latest advances in genesis of myelodysplastic diseases by John Keynote Address: Normal and neoplastic myeloproliferative diseases and myelodys- M. Bennett, MD; The interface of aplastic stem cells in health and disease by Irving plastic syndromes. anemia and MDS: treatment measures by Weissman, MD.

14 Current Discussions in MDS

Scientific Table 1. Novel Agents and Targeted Therapies for the Treatment of MDS Developments in Mechanism of Action Therapeutic Compound Application the Management Immunosuppression ATG, cyclosporine Low-risk hypocellular disease Immune modulation Thalidomide, lenalidomide Low to intermediate-1 risk, of Myelodysplastic in particular del(5q) Syndromes In combination with demethylating agents Inhibitors of Bevacizumab, lenalidomide, Variable applications angiogenesis thalidomide, arsenic trioxide DNA hypomethylation Azacitidine, decitabine All risk categories Inhibition of histone Valproic acid, In combination with demethylating deactylation depsipeptide, MS275 agents or purine analogs Oncogene deactivation Farnesyl transferase inhibitors: In combination with demethylating tipifarnib, lonafarnib agents or purine analogs Enzyme and kinase TLK199, Src family kinase In clinical trials for variable populations inhibition inhibitors, p38 MAPK inhibitor Purine analogs Clofarabine, cytarabine Combinations for high-risk MDS in the elderly Sandra E. Kurtin, RN, MS, AOCN, ANP Arizona Cancer Center Monoclonal antibodies Gemtuzumab ozogamicin High-risk disease in the elderly University of Arizona, Tucson Thrombopoiesis- Romiplostim Treatment-associated thrombocytopenia Tucson, Arizona stimulating hormone in all risk categories Reprinted from The Oncology Nurse Core Therapies and colleagues, who differentiated MDS Several key scientific events within the The establishment of an epidemiological from acute myeloid leukemia.4 The clinical past decade have shaped the current data reporting system specific to MDS in the application of scientific advances in the strategy for management of myelodysplastic United States has validated similar trends in diagnosis, risk stratification, and treatment syndromes (MDS). The majority of these incidence and age to those in the more of MDS since the disease was recognized have occurred in the past 5 years. An 2,3 established data from European sites. as a unique entity have been concentrated improved understanding of this hetero- These data provide a critical resource for in the past 5 years. Three active agents— geneous group of myeloid stem-cell analysis of therapies for MDS and confirm azacitidine, decitabine, and lenalidomide— malignancies, including insights into key that the highest incidence is in individuals are currently approved by the US Food elements of the malignant clone, the bone more than 70 years of age. There is an and Drug Administration (FDA) in the United marrow microenvironment, and the expected increase in incidence as the States as well as many other countries for the variability in disease trajectory, have been population ages. treatment of MDS. Direct clinical comparison key to clinical advances. To date, allogeneic stem-cell transplants of these agents is limited as each of these A revised World Health Organization are the only potentially curative therapy for drugs has only recently been approved for (WHO) classification system has been MDS. This is not an option for the majority of use in the setting of monotherapy and broad recently published incorporating this new MDS patients, however, based on age, inclusion criteria (all risk groups). 1 information. Hematopathologists and comorbid conditions, and donor availability. Based on key clinical trials and ongoing clinicians must develop the ability to Therefore, treatment strategies that are investigation, the first treatment guidelines translate data obtained using older feasible in the older population will be the for MDS were developed by the National definitions into current clinical trials that will core of MDS therapy. Improved quality of life, Comprehensive Cancer Network in 2004. be based on the revised nomenclature. The limited toxicity, reduced need for hospital- They have been revised a number of times rate of scientific discovery creates a ization, and affordability will be critical to each year since then, consistent with the number of challenges to clinical application successful therapies. Oncology clinicians relatively new understanding of key aspects of the findings, including transition of will need a basic understanding of treating of this disease and strategies for treatment. practice patterns, education of the clinician the older adult with cancer. In addition, definitions of response, desired and the patient, safety, and financial or The term myelodysplastic syndromes primary end points (survival vs response), reimbursement obstacles. was first used in 1982 by John Bennett, MD, and evolving recommendations for risk-

15 adapted treatment selection based on emphasizing the need to refine supportive ratio (HR) for risk of death was 0.33 (95% prognostics and individual patient profiles care strategies.10,11 confidence interval, 0.16–0.68), indicating continue to evolve. A comparative trial using In addition, trials using the immuno- that azacitidine reduced the risk of death azacitidine and decitabine, which are both modulatory agent lenalidomide for low- by 67% in these patients. OS was demethylating agents, is planned for 2009. intermediate risk MDS have elucidated a significantly longer in the azacitidine group Development of novel agents with unique difference in mechanism of action for than in the conventional care response group therapeutic targets is ongoing (Table 1). Key selected patient subsets. Analysis of the (13.1 months vs 4.6 months). clinical trials for FDA-approved therapies for data from the three lenalidomide trials in Fenaux and colleagues studied 358 MDS will be highlighted in this review with MDS suggests that lenalidomide has a patients with intermediate-2 or high-risk discussion of the implications for clinical different mechanism of action in patients MDS.18 The primary end point was OS in practice and patient care. with or without chromosome 5q deletion, a patients treated with azacitidine 75 mg/m2 Risk-Adapted Therapy for MDS possible direct cytotoxic effect on the per day on days 1 through 7 for 28 days malignant clone with del(5q) and effect on compared with conventional chemotherapy Harris and colleagues1 in the revised the microenvironment in patients without the (cytarabine [ARA-C]/daunorubicin 7+3, or WHO classification for MDS state that deletion of chromosome 5q.12-14 Cytogenetic low-dose ARA-C). The patients treated with “classification is the language of medicine: responses have been shown to correlate azacitidine had a significant improvement disease must be described, defined, and with improved survival in patients with in OS compared with conventional care named before it can be diagnosed, treated, chromosome 5q deletion. A follow-up and studied.” Understanding the pathobiology (P=.0001, HR=0.58). Median survival was evaluation of six patients participating in the of MDS has allowed identification of improved, from approximately 15 months on MDS-001 trial indicated the response to therapeutic targets and refinement of conventional care to 24.4 months with treatment strategies, including the concept lenalidomide to be durable with sustained azacitidine treatment. Approximately 52% of of risk-adapted therapy. The heterogeneous transfusion independence up to 6.5 years patients treated with azacitidine were alive at and provided evidence of sustained 2 years compared with 26% of patients who nature of the disease entities described within 14 the MDS nomenclature presents a challenge cytogenetic remissions in some patients. received conventional care. Considering the for hematopathologists and clinicians. Higher risk disease presents a particular original survival data from the IPSS and WPSS The integration of the International challenge in the older population, in whom with median survival of 1.2 years for Prognostic Scoring System (IPSS) and, more the focus of treatment is on survival, intermediate-2 and 4 months for high-risk recently, the World Health Prognostic Scoring suppression of the leukemic clone, and disease, this provides hope to patients with System (WPSS) have guided the selection management of disease and treatment MDS.This is the first trial in MDS to document of therapy based on projected disease toxicities. A fundamental principle of active a survival advantage for active therapies. trajectory and the risk of leukemic therapy for any stage of MDS is that Wijermans and colleagues reported transformation. The accepted classification sustained treatment for a minimum of 3 to 4 results from a phase 3 trial using low-dose for clinical manage-ment uses two primary months is necessary to effectively evaluate decitabine versus best supportive care for categories: low to intermediate-1 risk or efficacy, and the depth of response may 223 patients with high-risk MDS.19 intermediate-2 to high-risk disease based continue to improve up to 6 to 9 months Decitabine was administered at a dose of on blasts percentage, cytogenetic profile, after initiating therapy.15 The challenge is in 15 mg/m2 intravenously over 4 hours every and number of cytopenias. Several studies aggressively managing potential toxicities 8 hours for 3 consecutive days (n=119) have proposed additional adverse risk during the initial therapy to minimize gaps in versus base supportive care (n=114). In a factors, including thrombocytopenia, trans- treatment or unnecessary discontinuation of population of patients with intermediate-2 or fusion burden, lactic dehydrogenase, and therapy.16 Data supporting the potential to high-risk MDS (93%), many of whom had performance status.5-9 Continued review is improve OS in this disease, even in patients poor cytogenetic risk profiles (46%), the certain as an improved understanding of the with high-risk features, reinforce the need to median OS was not significantly longer with pathobiology of this disease and resulting refine clinical strategies for supportive care. the decitabine group (10.1 months vs 8.5 clinical implications are realized. Chromosome 7 abnormalities are an months). It is important to note that patients Lower risk MDS is accepted as a chronic unfavorable risk factor in MDS. An important who did achieve a complete response myeloid malignancy with an emphasis on study by Mufti and colleagues17 indicated a received a maximum of eight cycles, and the improved hematopoiesis, including transfusion survival benefit with standard-dose median number of cycles in this high-risk independence, improved quality of life, and azacitidine in high-risk MDS, including group was three. Given the recent shift extended overall survival (OS). Treatment chromosome 7 abnormalities (–7/del[7q]). toward treatment until progression and the until disease progression or unacceptable For the 57 patients with –7/del(7q) alone or expectation of a minimum of 4 to 6 months toxicity is now an accepted paradigm, as part of a complex karyotype, the hazard of therapy before achieving a response,

16 these disappointing data may be a reflection Table 2. Key Concepts in the Treatment of MDS of clinical trial design. It underscores the challenge of integrating rapidly changing ■ Myelodysplastic syndromes represent a myeloid stem-cell malignancy primary end points into a meaningful clinical ■ Clinical trial end points have shifted from efficacy and safety alone to include improved overall survival trial and the importance of continued ■ Complete eradication of the malignant clone is not necessary to prolong survival, but enrollment of patients in clinical trials. suppression is associated with transfusion independence, cytogenetic response, improved Supportive Care survival, and a reduced risk of leukemic transformation Supportive care strategies have also ■ Clinical responses often require a minimum of 4 to 6 months of therapy, and prolonged therapy been refined and are recognized as essential (treating until disease progression or unacceptable toxicity) is likely to become the standard approach components of the overall treatment ■ Concurrent supportive care is essential to optimal therapeutic outcomes including iron chelation, strategy, including quality of life. The goals of transfusion management, cytokine support, and aggressive management of comorbidities; therapy have shifted from supportive care however, supportive care does not affect the underlying disease alone to aggressive management of ■ Treatment-related MDS is associated with a poor prognosis and will require specific approaches cytopenias, including achievement of to treatment that are similar to those used for acute myeloid leukemia transfusion independence, iron chelation ■ MDS is most common in individuals over the age of 70; therefore, treatment strategies that are therapy, and development of new cytokines feasible for the older adult will be the core of MDS therapy for the treatment of thrombocytopenia. Myelosuppression is the most common increased risk of bleeding in a primarily participation in diseases with limited dose-limiting toxicity associated with active elderly population. available treatment options and evolving therapies, and thus strategies to minimize Romiplostim, a thrombomimetic agent, scientific discoveries. MDS is one of many cytopenias may allow patients to maintain was used in combination with azacitidine diagnoses with a rapidly changing treatment active therapy. and compared with azacitidine and placebo. paradigm based on scientific advances and Iron overload is associated with increased In patients receiving romiplostim, the platelet clinical management strategies. The goals of morbidity and mortality in patients with count before each course of therapy and the therapy in patients with MDS are to improve MDS, and iron chelation therapy has been 5,8 platelet nadir were higher than the counts quality of life, minimize toxicity, improve shown to improve OS. Sanz and colleagues for patients in the placebo group. In addition, hematopoiesis, reduce cytopenias, achieve studied 2994 patients with primary MDS. the group receiving the romiplostim required transfusion independence, and prolong The majority of these patients (78) had low- 5 fewer platelet transfusions, and the incidence survival. These outcomes have now been intermediate-1 risk disease. The study end of grade 3 bleeding events was lower.20 The realized in several of the studies discussed. points were OS and leukemia-free survival addition of this type of agent to active Consideration of the unique needs of the (LFS). Results of the study showed that red therapies for MDS, which require several elderly patient are critical to achieve optimal blood cell (RBC) transfusion-dependency months for maximum response while inducing clinical management and quality of life; (OS-HR=7.20, P<.001; LFS-HR=2.9, significant myelosuppression, can provide however, advanced age alone should not P<.001) and iron overload (OS-HR=2.11, the supportive care necessary to maintain exclude older patients from active therapies. P<.001; LFS-HR=1.57, P<.001) have therapy long enough to achieve response. prognostic value independent of the IPSS References Summary score. This study is thought to confirm 01. Harris NL, Campo E, Jaffe ES, et al. Introduction to the the validity of adding RBC transfusion The robust pace of scientific discoveries WHO classification of tumours of haematopoietic and dependency to the revised WHO prognostic relative to understanding the pathobiology of lymphoid tissues. In: Swerlow S, Campo E, Harris NL, et al, eds. WHO Classification of Tumours of scoring system. It also supports transfusion MDS and the development and clinical Haematopoietic and Lymphoid Tissues, Vol 4. dependence as a valid indicator for initiation application of therapies based on this Geneva, Switzerland: World Health Organization; 2008:14-15. of active therapies. Patients with MDS understanding provides great hope for 02. Ma X, Does M, Raza A, Mayne ST. Myelodysplastic should be screened using a serum ferritin at patients and clinicians. Several key concepts syndromes. Cancer. 2007;109:1536-1542. the time of diagnosis with continued for effective treatment of MDS have been 03. Germing U, Neukirchen J, Haas R. The epidemiology of myelodysplastic syndromes. Clin Leukemia. 2008; monitoring of these values. Ferritin levels identified (Table 2). There are still many 2:34-38. >1000 have been shown to be associated questions unanswered and a need to 04. Bennett JM, Catovsky D, Daniel MT, et al. Proposals with adverse outcomes. continue refinement of the diagnostic and for the classification of the myelodysplastic syndromes. Br J Haematol. 1982;51:189-199. Myelosuppression is the most common risk stratification for this disease. New 05. Sanz G, Nomdedeu B, Such E, et al. Independent treatment-related toxicity in therapeutic agents will be necessary to provide impact of iron overload and transfusion dependency on survival and leukemic evolution in patient with regimens for MDS. Thrombocytopenia is a continued treatment options. This myelodysplastic syndrome. Blood. 2008;112(suppl): particular challenge because of the underscores the benefit of clinical trial Abstract 640.

17 06. Malcovati L, Germing U, Kuendgen A, et al. Time- dependent prognostic scoring system for predicting survival and leukemic evolution in myelodysplastic “helping you give hope...” syndromes. J Clin Oncol. 2007;25:3503-3510. 07. Park MJ, Kim HJ, Kim SH, et al. Is International Prognostic Scoring System (IPSS) still standard in predicting FOUNDATION INITIATIVES FOR 2010 & BEYOND... prognosis in patients with myelodysplastic syndrome? External validation of the WHO Classification-Based ■ WORLDWIDE PATIENT Prognostic Scoring System (WPSS) and comparison with INTERNATIONAL IPSS. Eur J Haematol. 2008;81:364-373. QUALITY-OF-LIFE FORUMS WORKING GROUPS 08. List AF,Baer MR, Steensma D, et al. Iron chelation with ■ WORLDWIDE PATIENT deferasirox (Exjade) improves iron burden in patients with myelodysplastic syndromes (MDS). Blood. 2008; SUPPORT GROUPS These Working Groups are funded by 112(suppl):Abstract 634. the Foundation and focus on moving ■ US NURSING ADVISORY BOARDS 09. Kantarjian KM, O’Brien S, Ravandi F, et al. disease knowledge forward by Development and validation of a new prognostic ■ EU NURSING ADVISORY BOARDS model for myelodysplastic syndrome (MDS) that developing essential information accounts for events not considered by the through innovative research. International Prognostic Scoring System (IPSS). Blood. MDS FOUNDATION 2008;112(suppl):Abstract 635. RESOURCE CENTER ➧ International Working Group on 10. Kumar A, List AF,Mhaskar R, Djulbegovic B. Efficacy of hypo-methylating agents in the treatment of MDS Morphology myelodysplastic syndromes: a systematic review and Understanding MDS – meta-analysis of randomized controlled trials. Blood. A Primer for Practicing Clinicians ➧ International Working Group on 2008;112(suppl):Abstract 3632. A CME/CE 8-Part Series for Physicians, MDS Cytogenetics 11. List AF, Fenaux P, Mufti GJ, et al. Effect of azacitidine (AZA) on overall survival in higher-risk myelodysplastic Nurses, and Pharmacists ➧ International Working Group on syndromes (MDS) without complete remission. J Clin Written programs available in English, Oncol. 2008;26(suppl 20):Abstract 7006. Spanish, French, Italian, German, Japanese. Quality of Life in MDS 12. Sekeres MA, Maciejewski JP, Giagounidis A, et al. Cytopenias correlate with response to lenalidomide in ➧ International Working Group on del 5q MDS patients. Leuk Res. 2007;31(suppl 1): SPANISH FRENCH ITALIAN GERMAN JAPANESE S37-S38. Prognostic Scoring 13. List A, Dewald G, Bennett J, et al. Lenalidomide in the BECOME A CENTER myelodysplastic syndrome with chromosome 5q deletion. N Engl J Med. 2006;355:1456-1465. OF EXCELLENCE IN VISIT OUR WEBSITE AND 14. Raza A, Reeves JA, Feldman EJ, et al. Phase 2 study MDS MORPHOLOGY LINK TO OUR EDUCATIONAL of lenalidomide in transfusion-dependent, low- and RESOURCE CENTER: intermediate-1 risk myelodysplastic syndromes with INTRODUCING karyotypes other than deletion 5q. Blood. 2008; VIRTUAL 111:86-93. MICROSCOPY www.mds-foundation.org 15. Kurtin S, List A. Durable long-term responses in IN MDS-AML: patients with MDS treated with lenalidomide. Clin Leukemia. 2008. In press. THE KEY TO THANK YOU TO OUR VIRTUAL MICROSCOPY IN MDS-AML: 16. Kurtin S. Clinical advances in the treatment of THE KEY TO ENHANCING CLASSIFICATION ENHANCING SPONSORS FOR THEIR myelodysplastic syndromes: reasons for hope. You are invited to become a Center of Excellence in MDS Morphology... Practical Applications. December 2008:1-12. CLASSIFICATION SUPPORT THROUGH Presented by the MDS Foundation and the European School of Haematology. 17. Mufti GJ, Fenaux P, Hellstrom-Lindberg E, et al. A CME Series EDUCATIONAL GRANTS Treatment of high-risk MDS patients (pts) with Visit www.mds-foundation.org and – 7/del(7q) with azacitidine (AZA) versus conventional The Foundation’s work is supported care regimens (CCR): effects on overall survival (OS). click on The MDS Foundation Resource J Clin Oncol. 2008;26(suppl 20):Abstract 7033. Center to take advantage of these and by grants from: 18. Fenaux P,Mufti GJ, Hellstrom-Lindberg E, et al. Efficacy of azacitidine compared with that of conventional care other comprehensive programs designed regimens in the treatment of higher-risk myelo- to provide you with tools and information dysplastic syndromes: a randomized, open-label, that will assist you in administering the phase III study. Lancet Oncol. 2009;10:223-232. best care to your patients. 19. Wijermans P, Suciu S, Baila L, et al. Low dose decitabine versus best supportive care in elderly patients with intermediate or high risk MDS not ADDITIONAL PROGRAMS eligible for intensive chemotherapy: final results of the randomized phase III study (06011) of the EORTC ➧ Keys to Identifying Patients at leukemia and German MDS study groups. Blood. 2008;112(suppl):Abstract 226. High Risk for Bone Marrow Failure 20. Kantarjian H, Giles F, Greenberg P, et al. Effect of Syndromes: Is it MDS? romiplostim in patients (pts) with low or intermediate risk myelodysplastic syndrome (MDS) receiving ➧ MDS Practice and Treatment Survey azacytidine. Blood. 2008;112(suppl):Abstract 224. available for US and EU Physicians Reprinted from The Oncology Nurse. May 2009. Vol 2, and Nurses No. 3. For a free subscription to The Oncology Nurse, register online at www.theoncologynurse.com. ➧ Patient Questionnaires

18 Patient Services

Air Transportation UNITED AIRLINES CHARITY MILES Options for Patients ❐ Air transportation resources may be I want to help Mercy Medical Airlift provide free air transportation to patients in financial need. available for patients considering travel to one of the participating sites that are part of the NIH Rare Diseases Clinical Research Please process a gift of ______D ividend Miles from my United Airlines account. Network (RDCRN). (Please fill in number of miles – donations must be in 1,000 mile increments) Angel Flight’s volunteer pilots provide Name: ______flights in single-engine, four-six seat general Print Full Name aviation aircraft to patients at no charge. To be eligible, patients must be medically Email Address: ______stable, ambulatory, and able to sit upright in an aircraft seat during flight. Angel Flights United Mileage Plus Account Number: ______are for patients in financial need and who have their medical status certified by their doctors. An escort may accompany the United.Com Password: ______patient, and children may be accompanied by both parents. Phone Number: ______Flight distances are limited to 1,000 miles. Weight restrictions apply, and luggage is limited to 50 pounds. Safety is a primary Address: ______concern. Pilots will not fly in poor weather. Patients need to be flexible, have a backup City: ______S t a t e : ______Z i p Code: ______plan or be willing to reschedule their appointments. If you are interested in finding out if Angel Signature: ______D a t e : ______Flight meets your air transportation needs to participate in a clinical research study, Remarks: ______contact Marita Eddy at 301-451-9646 or [email protected]. ______For patients who live farther than 1,000 miles, other resources may be available ______through Mercy Medical Airlift. ______Mercy Medical Airlift (MMA), a non- profit organization celebrating 25 years of ______medical air transportation experience, manages programs and services available to Please mail to: patients with both common and rare Marita Eddy, Angel Flight-MMA diseases. NIH Office of Rare Diseases Research 25,000 If you are flying to any of the RDCRN 6100 Executive Blvd. MSC 7518 Frequent Flyer Miles equals 1 round-trip ticket facilities or going to a study at the NIH Clinical Bethesda, Maryland 20892 Center in Bethesda, Maryland, contact Marita. For patients who are looking for travel help to other locations, call the National Patient Travel Center at 800-296-1217 or check www.patienttravel.org.

19 Patient Forums and Support Groups

Patient Support Boston Patient and Family Forum Group Initiative Boston, MA • November 12, 2009 The MDS Foundation has developed a strategy for setting up patient groups nationwide and assistance is now available to organize support groups for MDS patients. At this time, we would like to enlist the help of our patient members in facilitating these member-run groups. Would you be interested in joining with a few other people to help start a needed support group for MDS? Monetary assistance is now available to help you develop a self-help group. The purpose of this group is to exchange information and resources, to provide comfort and support to patients and caregivers, and to explore the challenges of living with myelodysplastic syndromes. Dr. Richard Stone of Dana-Farber Cancer Institute addresses patients and their guests. Studies and other literature show that patients facing chronic or terminal illnesses, as well as their families and friends, benefit in numerous ways from participating in patient support groups. These groups not only provide a source for obtaining current information on the disease, treatment options and research, they also offer a supportive environment in which to express fears and concerns and share experiences with others coping with similar conditions. In fact, patients who participate regularly in support groups report reductions in stress, depression, and even pain. Any member of the Foundation, patients, friends, family members, and caregivers are invited to join with us to move this MDS Patient and Family Forum attendees in Boston, Massachusetts. project forward.

MDS Foundation Patient Liaisons PLEASE CONTACT:

US Patient Liaison EU Patient Liaison Ziggy ©2008 Ziggy & Friends. Audrey Hassan Sophie Wintrich [email protected] [email protected] P.O. Box 353 The Rayne Institute Crosswicks, NJ 08515 Denmark Hill Campus Tel: 1-800-MDS-0839 123 Coldharbour Lane Outside the US only: 609-298-6746 London SE5 9NU, UK Used courtesy of the creator and Universal Press Syndicate. All rights reserved. Fax: 609-298-0590 Tel: +44 20 7733 7558

20 Highlights From Toronto MDS Patient and Family Forum Around the World... Toronto, Canada • October 6, 2009 MDS Patient & Family Forum Leeds, UK April 14, 2009

Dr. Karen Yee from Princess Margaret Hospital during her MDS presentation.

Dr. David Bowen of St. James’s Institute of Clinical Oncology presented current issues in MDS.

Toronto patients and caregivers learning about the latest treatment options in MDS.

Group discussion with patients and caregivers. MDS Patient and Family Forum – Pittsburgh, PA • October 21, 2009

David Hall, Chairman of the MDS UK Patient Nurse Joan Latsko educating patients and their Dr. James Rossetti from the Western Pennsylvania Support Group. guests in Pittsburgh. Cancer Institute was the guest speaker.

21 Spreading the Word Worldwide – Quality-of-Life and Patient Education Forums

Ongoing meetings in the US and Europe ■ Bethesda, Maryland (August 2009) SOUTH AMERICA addressing QoL issues for MDS patients. ■ Birmingham, Alabama (August 2009) ■ Buenos Aires, Argentina (November 2008) The Foundation serves as an effective ■ educational conduit for information Hackensack, New Jersey (September 2009) regarding the most updated treatment ■ Boston, Massachusetts (November 2009) Established options, clinical studies, referrals to Centers ■ Lake Success, New York (December 2009) of Excellence, and other information MDS Patient concerning the Myelodysplastic Syndromes. CANADA Support Groups Patient forums have been held to date in: ■ Toronto, Ontario (October 2009) UNITED STATES UNITED STATES EUROPE ■ New York City, New York ■ Chicago, Illinois Support Group meets on (October 2004, December 2006) ■ Edinburgh, Scotland UK (March 2005) the fourth Tuesday of the month from ■ Tampa, Florida (November 2004) ■ Paris, France (January 2006) 1:30–3:00 pm at Northwest Community Hospital’s Cancer Service department (lower ■ ■ Bournemouth, England UK Palo Alto, California (December 2004) level), 800 W. Central Road, Arlington (February 2006, November 2009) ■ Scottsdale, Arizona (February 2005) Heights, Illinois. Contact Kim Jensen at ■ London, England UK ■ [email protected] or call 847-618-6914. Chicago, Illinois (March 2005) (February 2006, September 2008) ■ ■ Puget Sound, Washington Support Philadelphia, Pennsylvania ■ Hamburg, Germany (April 2006) (December 2005, February 2006, April 2007) Group meets on the third Tuesday of ■ Leeds, England UK (May 2006, April 2009) the month at 6:30 pm at the Puget ■ Pittsburgh, Pennsylvania Sound Blood Center, 921 Terry Avenue, ■ Marseille, France (May 2006) (February 2006, October 2009) Seattle, Washington. Contact Steve ■ ■ Oak Brook, Illinois (January 2007) Vienna, Austria (July 2006) Kessler at [email protected] or call ■ 800-877-0168. ■ Dallas, Texas (January 2007) Prague, Czech Republic (September 2006) ■ ■ San Francisco Bay Area Support Group ■ Seattle, Washington Stockholm, Sweden (September 2006) meets on the second Sunday of the (March 2007, August 2009) ■ Freiburg, Germany (February 2007) month at 2 pm at the Park Blvd. ■ Covina, California (March 2007) ■ London, United Kingdom (May 2007) Presbyterian Church, 4101 Park Blvd., ■ Rochester, Minnesota (June 2007) ■ Florence, Italy (May 2007) Oakland, California. Contact 800-MDS- 0839 for more information. ■ Baltimore, Maryland ■ Dubrovnik, Croatia (September 2007) (September 2007, June 2009) ■ Sinaia, Romania (October 2007) CANADA ■ ■ Philadelphia, Pennsylvania ■ Toulouse, France (May 2008) Toronto, Ontario Support Group. (February 2008, July 2009) Contact William Pearson at ■ Copenhagen, Denmark (June 2008) ■ Rochester, New York (April 2008) [email protected] or call ■ Lund, Sweden (September 2008) 905-561-699 for information on ■ Los Angeles, California ■ upcoming meetings. (May 2008, August 2009) Ontario, Canada (September 2009) ■ ■ Scottsdale, Arizona (May 2008) Tel Aviv, Israel (January 2009) EUROPE (Countryside Groups) ■ ■ ■ San Antonio, Texas Frankfurt, Germany (March 2009) France: Association Connaître et Combattre les Myélodysplasies (August 2008, September 2009) ■ Stockholm, Sweden (April 2009) ■ United Kingdom: ■ Atlanta, Georgia (November 2008) ■ Patras, Greece (May 2009) UK MDS Patient Forum ■ Columbia, South Carolina (March 2009) ■ Berlin, Germany (June 2009) ■ Czech Republic: ■ Chicago, Illinois (July 2009) ■ Cambridge, England UK (November 2009) Czech Republic MDS Forum

22 Patient Advocacy

Remembering As the recipient of a large bequest from quality of life and outcome evaluation in her estate, the MDS Foundation has cancer treatment research. Dr. Cella has Suzanne Fleischman established the Suzanne Fleischman several grants and contracts to study quality (1948–2000) Memorial Lecture, which is a perpetual of life and outcome evaluation. In 2008, he lectureship to honor Dr. Fleischman at all of received the International Society for Quality our international MDS symposia. The lectures of Life President’s Award. He has produced focus on the many concerns eloquently over 300 publications over the past 25 years. expressed by Suzanne during her lifetime as an advocate for patients with MDS. Suzanne Fleischman The 2009 Suzanne Fleischman Memorial Lecturer was Dr. David Cella. His topic was Memorial Fund for Symptom and Treatment Burden: Effect on Patient Advocacy Quality of Life. In his presentation, Professor Cella discussed several of the quality-of-life A fund has been established by the issues and outcome measures that arise and MDS Foundation in memory of Suzanne should be a major component of our Fleischman. Contributions may be discussions with patients and their loved ones sent to the Foundation with a notation early in the overall management of MDS. designating the Suzanne Fleischman Memorial Fund for Patient Advocacy. Dr. Cella is a graduate of Northwestern Professor Suzanne Fleischman died from University and received his PhD in Clinical New donations have been made by: complications of CMML in transformation on Psychology from Loyola University of February 2, 2000. An internationally renowned Edward Fleischman Chicago. Currently, he is Professor of authority in French and romance languages Prescott, AZ Psychiatry and Behavioral Sciences at she was intrigued by the medical jargon that Fay J. Wanetick Northwestern University Feinberg School of is pervasive in our patient interactions. As a Pittsburgh, PA spokesperson for the MDS patient community, Medicine. He serves as Executive Director of Roslyn Raney she shared her hard-won knowledge of this the Center on Outcomes, Research and Menlo Park, CA disease with patients worldwide. She was Education. He has built a clinical and our first patient advocate and delivered the research program with an emphasis on most meaningful address at the 1999 MDS symposium of all the hundreds of talks presented. As she stated so eloquently in Purchase MDS Awareness Pins her talk at the 5th International MDS The MDS Foundation has enameled Symposium in Prague: lapel pins for you to wear with pride and “From the moment of diagnosis MDS to increase public awareness about patients live under a mantle of chronic MDS. The pins are available in either a illness with scant hope of cure. Our diseases rectangular or circular design with a are rare and unfamiliar to the population at $3.99 donation to The MDS Foundation. large… my agenda is to communicate to To order your pins, call 1-800-MDS-0839. physicians those issues that are of concern to us.” The pins were created especially for the MDS Foundation to contribute to the effort to help people worldwide living with Her last posting on January 19, 2000 to MDS. Your donation will help increase awareness of this little the MDS community of patients on the known disease, which is the most common of the Internet was typical of Suzanne — “know hematologic malignancies. Please ask your family and friends how much it means to me and how gratified to wear these pins in support of our mission! I feel knowing that you all have benefited from whatever I could pass along and share with you to make your lives a little better.” She will be missed.

23 Advocate Experience every aspect of a trial. Specific goals are GIVE A GIFT OF HOPE... established, and measurements against Raymond W. Malles these goals determine if a path will continue Journey to Hope I was fortunate to be asked to represent or be abandoned. Patient safety is the the MDS Foundation as a patient advocate primary objective. There are several types of Bracelet after receiving a call from Novartis Oncology. clinical trials, and none are utilized in every Lovin’ Kisses Beading Inasmuch as this task was “right up my case. The task of obtaining patients willing to Promoting MDS Awareness alley,” I readily accepted. participate in a clinical trial is huge. I, for Sandy Madrigal, Designer/Creator My first meeting with others, representing one, would willingly be a part of a trial should P.O. Box 2541 the full spectrum of cancer advocacy, was on I reach a plateau where my treatment Davenport, Iowa 52809-2541 March 11, 2009, in Morristown, NJ. There regimen is failing and I meet the criteria for was a follow-up conference call during the inclusion. Anyone dissatisfied with their Visit www.lovinkissesbeading.com. summer and the second meeting this treatment and progress should explore the This handcrafted bracelet was created September in Cambridge, MD. Part of this clinical trials that may help them. Continue recent gathering included a guided tour of the to monitor the MDS-Foundation.org to draw attention to Myelodysplastic Syn- Novartis Research Laboratory. Never having website where active trials are described. dromes. My design is dedicated to the loving been exposed to this environment, I was My opening paragraph mentioned that memories of my mother, Betty, and my totally amazed. The research process in this being an advocate was “right up my alley.” In sister, Linda. They were diagnosed with MDS facility is totally controlled by a vast computer keeping with that statement, I offer you a just eight weeks apart. Both fought the system—including the introduction of comprehensive video that addresses our disease bravely and with great dignity. robots. This company stores in excess of disease from a patient's perspective. I have Now I’m doing what I can to continue three million compounds they have developed learned so much from personal investigation, their fight. Each bracelet is only $20.00 and use to discover new oncology products. involvement in MDS Patient Forums and (plus S&H). Visit my website for details. A As a research scientist embarks on a path to experience that I applied my talents to create portion of the proceeds from the sale of my deal with a targeted form of cancer, he or she this educational video. The Foundation was bracelets will be donated to the MDS orders specific combinations (from the stored kind enough to provide a link on their Foundation to help further their research and compounds) for testing. The robotic system website. On the opening web page, simply create awareness. gathers precise amounts of the selected click the “links” on the lower left side. On the compounds, and stores the new combination next page, select the three parts found on the in a controlled environment to observe the lower right side. The last part is an interview results. This tedious process involves untold of another MDS patient. There are a few amounts of time and effort. The staff areas where background voices make indicated drug development typically takes listening difficult, but I felt its content was fifteen to twenty years to develop and to important regardless. It was someone other reach the marketplace. In between, there than me who can hopefully educate others. are many dead ends and failed expectations. The video might serve to inform friends and Complications are encountered in many ways family who don’t quite understand the as the company pursues its objective. complexities of MDS. Please give them a try. Unexpected results along the way often force Considering what I have learned since Women’s Journey to Hope Bracelet scientists to change their course. The being diagnosed with MDS, it is not difficult seemingly endless chemical analysis, animal to see why medical treatment in this country testing, clinical trials and FDA approvals is expensive. The long and involved shape the lives of everyone devoted to this development process, high salaries of the noble cause. The obvious goal is to treat and “best and the finest,” numerous failed hopefully cure disease in all of its forms. attempts, and costly clinical trials Part of our meeting included a systematically add to the final product cost. presentation on clinical trials. This area of the I, for one, believe our healthcare system is development process is not easily understood the best in the world. Debating the areas by the average citizen, hence my awakening! needing change certainly does not signal a Controls and restrictions imposed by the complete overhaul of our healthcare system. Food and Drug Administration spell out I believe fine tuning is all that is necessary. Men’s Journey to Hope Bracelet

24 MDS Patients Share Their Stories...

The Foundation would like to invite Our first impressions with the patients and their families to share their hematologist were not good; he in no way stories with others in the MDS community. tried to explain the seriousness of the Living with MDS poses challenges, and disease and, in our opinion, offered no many of you have stories that provide hope “reasonable” treatment. to others. Please contact the Foundation, if I was a retired research engineer and you would like us to publish your story. had also had a BS in Chemistry. I had been involved in research since the early 1960’s SUBMITTEDSUBMITTED FROM FROMOKLAHOMA, USA USA and was not willing to just sit by and watch the MDS get worse. Our research on the My MDS Journey Internet had educated us as to the serious- ness of the disease, and that clinical trials Kirby Stone MDS Patient Kirby Stone and wife Nancy. might be available. Both AA/MDS International Foundation and MDS Foundation personnel INTRODUCTION My wife and I knew leukemia was serious were very helpful in providing names of but had never heard of myelodysplasia. We Before starting my MDS Journey I would doctors and institutions that might offer even asked him to spell it for us before we like to offer some suggestions: clinical trials for MDS. left his office. ■ Educate yourself on MDS We have friends who have a home in At home we quickly searched the Internet ■ Tucson, AZ. I called the Arizona Cancer Find a doctor you are comfortable with for myelodysplasia and were SHOCKED Center at Tucson — a center of excellence who has experience treating MDS patients when we read of the seriousness of MDS. for MDS. We were planning to visit Tucson in ■ Keep a positive attitude and never give up We felt it was the doctor’s responsibility to mid-February and arranged a meeting with ■ Take advantage of Patient Conferences explain how serious this might be. The MDS Dr. Mahadevan, the director of MDS Until early 2004 I had been exceptionally Foundation has been very helpful in research at ACC. On February 16, 2004 we healthy. I had never spent a night in a providing information throughout the period met with Dr. Mahadevan and his research hospital. I was born at home in a small of my illness. nurses. He was concerned that my MDS town in Oklahoma in 1941. In July 2002 My wife, Nancy, has been a wonderful could “blast off” quickly since it was already I was diagnosed with Celiac disease, caregiver throughout my journey with MDS in the excess blast stage. One of the which is gluten intolerance and is an and we are always together for every complicating factors was the fact that as one autoimmune disorder. Eliminating gluten doctor’s visit, bone marrow biopsy and of Jehovah’s Witnesses, I do not take blood from the diet cures the symptoms so it other treatments. I will use the term “we” transfusions of any kind; therefore strong can be controlled. throughout this description of “our” chemotherapy couldn’t be tolerated. Dr. In late 2003, I had a routine physical fighting this disease, since we are always Mahadevan thought they could treat me and exam. While on vacation at Kitty Hawk, NC, together. I could not survive without her suggested we apply to enter a trial at ACC. for the celebration of the first century of loving assistance. We returned home to Cincinnati and flight, I received a phone call that suggested February 4, 2004 we returned to the researched other options, calling several I should have my blood counts rechecked hematologist’s office where he reviewed the doctors, hospitals, etc., but found no other when I returned home to Cincinnati, OH. results of the BMB. He diagnosed my trials that were open. Revlimid was in clinical disease as MDS with the blasts at 6–7%. trials but no trials were open and DIAGNOSIS His suggested treatment was to have blood “compassionate use” was not an option In mid-January 2004, the blood test was drawn every month to see what the from Celgene. repeated and it revealed low blood counts: progression was. He said that Thalidomide Nancy and I decided to travel back to platelets=86, WBC=2.2, Hgb=11.9. I felt was the only drug available, but it had Tucson and try to enter the trial using fine but my doctor wanted me to see a serious side effects and its effectiveness Avastin. We arranged to stay in Tucson as hematologist/oncologist. On January 27, would eventually stop. We asked him to fill in long as needed. 2004, the hematologist performed a BMB in the blanks on a form to rate the MDS; I had On March 1, 2004 a BMB was performed his office during my first visit with him. He tri-lineage effects, and blasts over 5%, at ACC. The results were back on March 4, indicated he was testing me for leukemia putting me at RAEB-1. 2004 with the blasts at 12.5%. The results and myelodysplasia. He never indicated The prognosis for life expectancy was not were of concern to us but ACC did not seem how serious a disease myelodysplasia was. good even at this initial diagnosis. too concerned. On March 19, 2004, we

25 were called by ACC and informed that I diagnosed with it on February 4, 2004 and with the Revlimid and seemed to be reduced would not qualify for the trial. It seems the it was now April 20, 2004. I had not somewhat over the next few months. BMB slides had been sent to Stanford received any treatment or medication for University and the analysis there was that MDS as of that date. VOLUNTEER TO HELP OTHER PATIENTS: ANOTHER LEG OF MY MDS JOURNEY the blasts were 18–19% and this was too On April 21, 2004, we found the blasts close to AML for me to qualify for the trial. were now at 14–16% increasing from the Fairly early in my battle with MDS I found Since Stanford University controlled the trial 12.5% at the Arizona Cancer Center. Dr. B the internet web sites for MDS patients. we had no recourse but to return to started me on Thalidomide at 100 mg/day These services allow patients to ask questions Cincinnati. We were told that we should on April 21, 2004. At that point in time and receive answers regarding their disease return to our home to be near our support there were no drugs specifically for MDS. and treatments. Over the years I met many systems, since in their opinion, I had three to Thalidomide had been successfully used for wonderful people who helped me to cope four months to live. A wonderful nurse multiple myeloma patients and had been with MDS. With some I developed a close practitioner at ACC who had worked with us tried in an “off-label” use for MDS with relationship — contacting them directly via suggested we could try Thalidomide at some success. email or by phone. 100 mg/day or low-dose Ara-C after Within three weeks my platelets and Hgb I also volunteered to receive calls from returning to Ohio. She has been a real were increasing, and within five weeks all other MDS patients — some recently encouragement to us over all the years. counts were increasing. My response to diagnosed. These calls allowed me to give The return trip from Tucson, AZ to Thalidomide was exceptional. Procrit and encouragement to new patients. Being able Cincinnati, OH was a sad and difficult Neupogen were used as needed initially but to discuss your disease with another patient journey. We had no real hope at that moment were later discontinued as all the blood can help you cope with MDS. Medical advice and the loss of a chance at the clinical trial counts returned to good values. is not the purpose of these discussions; left us devastated. We had not been able to On September 22, 2004 a BMB revealed rather it is to listen and perhaps relate your find any trial or treatment anywhere else. NO DYSPLASTIC CELLS and the blasts at experiences in dealing with MDS. Over the On a side note, Avastin did not prove to <2%. We were thrilled at the results. years I have talked with many other MDS be effective on MDS patients, so my rejection My treatment with Thalidomide continued patients, and it is a rewarding experience. from the trial at the University of Arizona positive for 32 months until late 2006. On The patient conferences are a wonderful actually proved to be a blessing, as will be December 6, 2006 a BMB revealed the way to meet other patients and hear truly noted on my further treatment successes. blasts were at 4.5%, the platelets had expert doctors speak on treatments for dropped to 86, and the WBC to 3.6. We MDS. The group meetings with other MDS THE FIRST LEG OF THE JOURNEY: decided to change to Revlimid, now patients are always very encouraging and TREATMENT WITH THALIDOMIDE available “off-label” to patients who did not informative. I encourage any MDS patient Returning to Cincinnati we searched for have the 5q chromosome deletion. and their caregivers to attend these a hematologist/oncologist that would try to Over the 2.5+ years of my journey up to conferences. treat the MDS aggressively rather than just that point, I had eight BMBs to monitor my watching and waiting. My work in research bone marrow conditions. Dr. B was keeping Being able to discuss your and engineering would not let me take careful track of my MDS. such a passive approach. I always felt a disease with another patient proactive approach was best in dealing THE SECOND LEG OF THE JOURNEY: can help you cope with MDS. with any situation. TREATMENT WITH REVLIMID Medical advice is not the We found a wonderful hematologist/ On December 24, 2006 I started oncologist who had helped a dear friend of treatment with Revlimid at 10 mg/day. The purpose of these discussions; ours with chronic leukemia a few years results were almost immediately good rather it is to listen and perhaps before. On April 14, 2004 we met Dr. B with the platelets increasing to the 170’s and discussed my situation. He did a BMB in one month. The other counts also relate your experiences in that day and said to give him a week to get increased nicely. dealing with MDS. Over the the results and come up with a treatment Revlimid was much easier to take than years I have talked with many plan. He said he “would help us and would Thalidomide, having much fewer side treat my MDS.” Nancy and I were very effects. I had sustained some neuropathy — other MDS patients, and it happy to have a doctor who would try to numbness in my hands and feet — with the is a rewarding experience. treat my MDS aggressively. I had been Thalidomide. This did not increase further

26 ANOTHER LEG ON MY JOURNEY: SUBMITTEDSUBMITTED FROM FROM CANADA USA SEEKING TO FIND ANOTHER TREATMENT In mid-2008 my good response to My Story Revlimid started to wane. My platelets and WBC started a slow decrease. This is often William Pearson the case with Revlimid, and we tried reducing I’m a 73 year-old retiree, although I still dosages over a period of a few months in an do some consulting — keeping my finger in attempt to find a successful dose. the pie, so to speak. On October 8, 2008, a BMB revealed In the fall of 2002, I was in Poland on a 6% blasts and a record low for my consulting assignment. A normal day would platelets. My doctor and I decided to stop start by walking from our hotel to the office, Revlimid. By May of 2009 the blasts had about two kilometers. Most days we would increased to 16–17%. travel by car to about five different steel MDS Patient William Pearson and wife Janet. Since mid-November we have tried four companies. My role was to study the cycles of Vidaza and one Dacogen cycle. operation which required, in many cases, marrow. My hemoglobin was still in the low None of these new medications seemed to taking stairs to the operating deck and 90’s. This continued through to June 2007. be controlling the MDS. We are seeing some general walkabouts. About a week into my Between June and September I was transfused success using Thalidomide for the second project it started when climbing the stairs at another nine units of red cells. I had another time, after being off of it for three years. one of the steel companies — I had to rest bone marrow and received a call from Dr. I’ve had a long success against MDS — a number of times. Instead of walking to and Gee one evening advising me that the MDS over five years as an RAEB-2 patient. At from the hotel I started taking a taxi. had slightly worsened. NK cells were diagnosis the numbers suggested I might live On my return to Canada my first visit was reactive, but no sign of leukemia. On a follow- only a few months. This time has enabled me to see my family doctor. She ordered blood up appointment with Dr. Gee in August 2007, to spend more time with my grandchildren tests which indicated my hemoglobin was a she asked permission to refer me to Princess and to encourage other MDS patients. low 7.9. Margaret Hospital in Toronto to see if I would We have learned that one should never The next step was a referral to a local qualify for a study group or clinical trial. give up, since newer treatments continue to hematologist, Dr. S. Gee. She did further September 5, 2007: I had my first be developed. I’ve still not spent a night in a blood work, again resulting in low hemoglobin appointment at Princess Margaret Hospital hospital... and hope to keep it that way. and a white cell count of 2.5. My platelets (which has the designation of Center of ALWAYS keep a positive attitude and were of normal value. Following a bone Excellence by the MDS Foundation). As one learn as much as you can about MDS in marrow test I was diagnosed as having would surmise, I had but another bone your journey. MDS. My reaction was “what is MDS?” Dr. marrow done by Dr. K. Yee. She also asked Gee went into details of the disease with my permission to take an additional sample of wife Janet and myself. Dr. Gee is still very my bone marrow for research. supportive and accessible. Tests taken on During the period of September 12, 2007 January 27, 2003, showed my Hb. 8.1, WBC to January 10, 2008, I was transfused 16 2.4, and platelets 353. On the following visit, more units of red cells. During that time I Dr. Gee said she wanted to try me on a drug had CT scans and many tests involving my called Danazol. The drug had a low blood, which all proved negative. My ferritin percentage of success, less than 15%, but it level became a concern. On October 31, Dr. had a positive effect on me. June 16 my Hb. Yee indicated she wanted to try me on a reached 101. I had blood tests every month drug called Cyclosporine — which would be for two years (2004–2005) and during that covered by the provincial government upon time my Hb. averaged 11.1. In April 2006, I approval. My type of MDS did not fall into suffered a setback. My hemoglobin dropped any ongoing clinical trials of other drugs to the low 80’s. They put me through a being used for MDS. At that point she was number of diagnostic tests (colonoscopy/ unsure what the outcome would be with this gastroscopy) to rule out an internal bleed. drug. On December 11, 2007, she called me There was no bleed. I was then transfused at home to say she had approval for me to four units of red cells and another bone start Cyclosporine on January 1, 2008. On

27 January 18, 2008: I received approval from 25 mg, the last being in March of 2009. I was ■ Dr. Gee, who diagnosed me as being an my medical carrier that they would support reduced to 50 mg twice daily. This started a MDS patient and started my early me if I was required to take Exjade because downswing of my hemoglobin. In May 2009 treatment, and was quick to move me of iron overload. January 20th: She called my cyclosporine dosage increased to 175 mg forward to the next level which was to and wanted me to start magnesium and twice daily. During the down-swing, my Hb. Princess Margaret Hospital and Dr. Yee. watch my blood pressure (due to some of was between 10.1–11.4. On October 7, ■ Dr. Yee — I really can't say enough about the side effects of Cyclosporine). January 2009 my Hb. was 12.7. the care, follow up, etc. that I receive. Her 23, 2008: I started a mild blood pressure From the fall of 2002 to the present I sense of humor and her accessibility medication. Cyclosporine appeared to be have had 170 hospital visits. make the visits to PMH more comforting. working. By the end of January my Hb. was MDS has changed my life, but I can still ■ 11.7. February 13: CT of liver was ordered golf, take vacations, remain active in my The support I received from the MDS as my ferritin was still very high. CT was consulting business, and spend time with Foundation, and, locally, The Leukemia done February 28. March 12: Hb. was 13.0; my grandchildren. I am an ambassador and and Lymphoma Society. next meeting would determine Exjade first connection volunteer for The Leukemia ■ A patient forum in our local area, and start. April 9: Hb. was 13.8 and we had to and Lymphoma Society. I also support the volunteers from MacMaster University increase magnesium. Dr. Yee and Janet MDS Foundation where I can. Hospital. together agreed to try a phlebotomy instead What makes this all happen: of Exjade, of course with my approval. I was Princess Margaret Hospital is 1.5 hours to discuss therapeutic phlebotomy at my local ■ I have a most understanding soul mate, away from where I live. Because of the hospital with Dr. Gee. May 7: Hb. 14.1. During my wife Janet, who attends all my continuous monitoring I receive, the blood the period from May 2008 to December meetings, appointments and keeps me tests between my visits to Princess 2008, I had four therapeutic phlebotomies, on track— she doesn’t let me miss Margaret are done at my local hospital, and my hemoglobin ranged from a high of taking meds, etc. Joseph Brant Memorial, under the direction 14.3 to a low of 11.8. Another MRI would be ■ My family doctor, Dr. Liberatore, whose of Dr. Gee. During my out of Province done in February 2009. On July 22, 2008, Dr. quick action got me a referral to Dr. Gee, vacation I was able to have my blood work Yee started to reduce my dosage of and who has followed and monitored my done at the local hospital in Campbell River, Cyclosporine, decreased in increments of progress through this period. British Columbia.

Learn More About MDS: Join the Journey to Hope for MDS What is MDS? ■ The primary cause of these disorders is Desferal ® (deferoxamine). None of unknown; however, the chemotherapy these are curative. ■ The myelodysplastic syndromes (MDS) regimens that are utilized to provide are a family of similar diseases that share curative therapy to patients with certain How to Help: many common characteristics and affect malignancies (lymphomas, testicular ■ tens of thousands of individuals world- Bone marrow transplantation is often cancer, and breast cancer) can lead to the wide. This number reflects only those the only chance of survival. Nearly 70% development of secondary MDS. patients who are properly diagnosed. of the patients are without a match. ■ These disorders are a primary disease of Until recently treatment consisted only of The need is especially critical in racial supportive care including blood trans- the bone marrow and share several and ethnic minority groups. fusions (red blood cells or platelets), and characteristics of the acute leukemias; ■ As a not-for-profit organization, the MDS treatment with growth factors like however, MDS far exceeds any of the Foundation depends entirely on public erythropoietin (EPO) with G-CSF or GM- leukemias in prevalence. We are seeing funding in the form of individual gifts, CSF. There are now three drugs approved many more cases each year and that donations from individual and corporate for the treatment of MDS: Vidaza® number will increase greatly over the next entities, and membership fees to further (azacitidine), Dacogen® (decitabine), and decade as the baby boomers age and our work. Revlimid® (lenalidomide). At present, diagnosis improves. there are two FDA-approved drugs for the ■ To learn how to support the MDS treatment of transfusion-dependent iron Foundation, go to the Foundation’s overload: Exjade® (deferasirox) and website at www.mds-foundation.org.

28 Patient Tributes

Wirral Walk in As a family we are still in shock, struggling to come to terms with our loss and not a day Memory of Ian Denton goes by when we don’t miss him desperately. It has left a huge hole in our lives. Wirral Peninsula, UK On Sunday, May 17, 2009, 42 of us took May 17, 2009 part in the Wirral Coastal Walk, which is a Ian was a very lively character with a very 15 mile walk around the Wirral Peninsula. quick wit and wonderful sense of humour. We started at Seacombe Ferry Terminal This was evident in all aspects of his life, (famous as a landing stage for the “Ferry home and at work. He was very well known across the Mersey” to Liverpool) and ended in the community. He had been the sub- Alison Denton and her children, Stephanie up at Thurstaton, which overlooks the River postmaster in and Andrew at the Wirral Walk in 2009. Dee. Although the morning started off two busy post The family walked in memory of Ian Denton. bright, 90 minutes into the walk, we were offices which treated to horizontal rain, closely followed by we had run difficult to treat. It attacks the bone marrow, huge hailstones. 40 out of the 42 completed together for the affecting blood cell production and it is one the walk despite the weather, and we last 8 years. He of those diseases that you can have in managed to raise over £7500 (+$11,000) enjoyed playing different degrees. Although there are for the MDS foundation. Many of the walkers golf, was a various new treatments that can help some were friends of our two children, Stephanie season ticket people to control some of the symptoms, and Andrew, who were in the middle of holder at his the only cure is a successful bone marrow their GCSE and A level exams but took the beloved Everton transplant. In Ian’s case, he quickly became time to support us in our efforts. We also Football Club, along with our son Andrew, and transfusion dependent and we were told he received many donations from customers he was also a keen fisherman. Ian was a very would need a bone marrow transplant as at the post office in Upton, where Ian was sociable man, always the life and soul of any soon as possible. The biggest threat to him sub-postmaster until diagnosed with LGL at this time though, was infection, as the gathering, and his loud, infectious laugh leukaemia and myelodysplasia last June disease had made his immune system could always be heard above everyone else. (and which I have now taken over the practically nonexistent. But most of all he was a real family man, a running). We have been touched by so many fantastic Dad to Steph and Andy and we After being told on 13th of October that kind people who have given up their time were just a very close, happy family. they had a perfect donor match for his bone and donated generously in memory of Ian, marrow transplant, Ian was back in hospital We became concerned towards the end and we can’t thank them enough for their on the 14th with another infection. of 2007 as Ian was feeling tired all the time, support. We sincerely hope our efforts will and had lost a lot of weight. We were This time it was to prove too much for help others to win their battles with MDS. eventually able to talk him into going for a him and we lost him on October 22, 2008. – Alison Denton full medical assessment. The results showed that although he was healthy in every other way (he had never been ill in the 25 years I had known him), he was anaemic. After a further 6 months of tests, he was diagnosed in June 2008 with LGL leukaemia (a very rare but very treatable form of the disease). We were almost relieved that we now knew what the problem was, and we were told that a mild course of chemo in tablet form would probably sort him out. But shortly after this diagnosis we were told that they had found something else in the bone marrow biopsy — myelodysplasia. This again is not very common, especially in people under 60, but it is not only difficult to diagnose but also Group photo of Wirral walkers, Wirral Peninsula, UK

29 Wirral Walk – Ian Denton Memorial Fund A fund has been established in memory of Ian Denton. Donations have been made by: Alison Denton, Wirral, UK J. Drake, Wirral, UK P. Denton, Wirral, UK Julia Gibson Associates Ltd G.J. & A.C. Denton, Wirral, UK Wirral, UK P. Fardoe, Wirral, UK AMP Vehicle Finance Ltd, Wirral, UK T. Fifield, Wirral, UK Ian Denton Memorial Fund: Andrew Denton Wirral Grammar School, Wirral, UK (Ian’s son, far right) and school friends from the HSBC Golf Society Liverpool S.J. & R.A. Goodwin, Wirral, UK Wirral Grammar School for Boys participated in the Liverpool, UK Gouldman Music Ltd, Wirral, UK Wirral Walk in May to benefit the MDS Foundation. Ralph P.K. Carmichael, Wirral, UK W. Hope & L. Kelly-Hope, Wirral, UK D.H. Carmichael, Wirral, UK K.E. & C.M. Jones, Wirral, UK Sophie Carmichael, Wirral, UK Andrew M. & Sally A. Kay, Wirral, UK William Carmichael, Wirral, UK Charlie Landsborough E.C. Wyn Carmichael, Wirral, UK Enterprises Ltd Wirral, UK C.W. & L. Jones, Wirral, UK Penn Program for I. & A. Lees, Wirral, UK P. & E. Kinsella, Wirral, UK Stress Management L.M. Nottingham, Wirral, UK Jennifer Harris, Wirral, UK The Port of Mostyn Ltd, Wirral, UK Stressed? Want to learn how to manage S.P. & P. O’Gorman, Wirral, UK your symptoms of stress more effectively? E. & A.J. O’Neill, Wirral, UK I. & J.R. Bolshaw, Wirral, UK The Penn Program for Stress Management J.L. & D.J. Pattinson, Wirral, UK C. & D. Chamberlain, Wirral, UK is a mindfulness-based stress management J.E. Price, Wirral, UK program that uses powerful meditation- E. Lewis & N. Rodgers, Wirral, UK Neville Robinson–Krown Print based techniques as the primary tool for W.R. Fisher, Wirral, UK Wirral, UK long-term stress management. Mindfulness R.D. Raynor, Wirral, UK N. & K.L. Roe-Ely, Wirral, UK is taught as a scientific, systematic approach in which participants learn to Colin N. Woolley, Wirral, UK G.D. & B.E. Smith, Wirral, UK rest attention in the moment-to-moment S.J. Jones, Wirral, UK Evan J. & Helena L. Taylor, Wirral, UK awareness of their experience of physical D.B. & H. Bell-Jones, Wirral, UK N. & M.L. Topham, Wirral, UK sensations, thoughts and feelings. H. Betteley, Wirral, UK A.M. & J.E. Walsh, Wirral, UK Participants of the program thoroughly DEVA Medical Electronics Ltd J.R.W. & H.A.W. Williams, Wirral, UK explore mindfulness and its uses in reducing Wirral, UK Estelle Jordan Marketing and PR Ltd the symptoms of stress that are experienced Susan Bloom, Wirral, UK Wirral, UK in the body and mind. 7 class locations in the Philadelphia region. G.G. & M.V. Box, Wirral, UK G.A. Roberts, Wirral, UK H. Burke, Wirral, UK L.B. Crombie, Wirral, UK To learn more about this program go to www.pennhealth.com/stress or contact: Mark P. & Andrea Carri, Wirral, UK M.G. & N. Cornish, Wirral, UK PENN Program for Stress Management J.S.A. Cecil, Wirral, UK N.A. Stanley, Wirral, UK 3930 Chestnut Street, 6th floor Atlanta Healthcare Ltd, Wirral, UK M.P. Wilkinson, Wirral, UK Philadelphia, PA 19104 B.F. Mountain & R. Clarke, Wirral, UK S. Saunders, Wirral, UK Phone: 215-615-2774 T.J. Cox, Wirral, UK Noel Guildford–Guildford Consulting Fax: 215-615-2729 S.A. & K.M. Crabtree, Wirral, UK Wirral, UK E-mail: L. & A. Creme, Wirral, UK M.T. Haywood, Wirral, UK [email protected] www.pennhealth.com/stress

30 Son Raises Funds for MDS Research Walter Cahall Portland, OR My father, Clem Cahall, passed away on October 4, 2008, after his two-year battle with Myelodysplastic Syndrome, or MDS. I had often thought about running a marathon, and when I discovered the date of the Portland Marathon was this October 4th, 2009, I knew that I was meant to take on this challenge to honor his memory. I also competed in the Portland Marathon to help support the MDS Foundation, a multi-disciplinary, international organization devoted to the prevention, treatment, and Walter Cahall and family at the Portland Marathon Finish Line, Oct 4, 2009. study of myelodysplastic syndromes. The Walter (left) with mother Eleonore Cahall, sister Darleen Cahall, sister Cheryl Costales. Walter is foundation's staff was very helpful with holding a photo of Dad Clem along with the MDS logo that he wore during the race. He also put his getting my fundraising efforts organized. Dad's name on his racing bib. I was very touched by the generosity of family, friends, and co-workers during this fundraising drive. Many people were like Clem Cahall Memorial Fund myself and had not heard of MDS before my Donations have been made by: father’s diagnosis. I also made new connections with other people who have had David Biggs Frederick Hirsch Amanda Briles family afflicted with this syndrome. Portland, OR Portland, OR Portland, OR Even before the marathon’s starting gun Eleonore L. Cahall Carl W. Foster CPA LLC Bruce A. Kaiser fired, I felt victorious: everyone's contributions Lake Oswego, OR Portland, OR Tigard, OR totaled over $2000! This tremendous Keith Barrow Catherine Speake Robert Bell support inspired my drive all the way Aurora, OR Seattle, WA Tigard, OR through the finish line. For those who helped Snyder & Foster, CPA LLC Jan Moran Peg Pfab to make this drive a success, I am extremely Portland, OR Portland, OR Aloha, OR grateful. And for the love and memory of my Lisa Preble Tom Hendrie Paul Halvorson Dad, I am eternally grateful. Gladstone, OR Wilsonville, OR Portland, OR Barry Raber Carollyn Farrar Carol Ann Sloan Portland, OR Portland, OR Vancouver, WA John Lancaster Deanna Ricci Ginna Raahauge Tigard, OR Portland, OR Gilroy, CA Heather Campbell Sabrina Lindquist Thomas & Claire Gladstone, OR Happy Valley, OR Collier-Hoffmann Jack Rust Northwest Natural Portland, OR Fairfax, VA Gas Co. Maria Mattis Northwood Portland, OR West Linn, OR Business Services Anita White Portland, OR Sherwood, OR Walter Cahall (left,) with Dad Clem

31 Nutritional Health

high in calories, so substitute almonds for a grains depending on your caloric intake, of 51 Healthy Foods snack that’s high in trans- or saturated fat; which at least half should come from whole You Can Say “Yes” To otherwise the added calories offset any grains.) Try cooking up some barley — also heart-healthy benefits. Recent research a good source of iron and minerals — in Reprinted from Tufts University from the Antioxidants Research Laboratory place of white rice. But make sure you’re Health & Nutrition Letter at Tufts’ Jean Mayer USDA Human Nutrition buying whole-grain barley, not the “pearl” Hardly a day goes by without the news Research Center on Aging has demonstrated variety with the healthful outer husk removed. media reporting some food that’s been an antioxidant synergy between flavonoids Whole grains have been associated with found to be bad for you. One day it’s and vitamin E in whole almonds. Almonds protection against heart disease and cancer, processed meats; the next, it’s baked goods are also a source of riboflavin, magnesium and may help control diabetes. Other good made with transfatty acids. Faced with this and zinc. whole-grain choices of this type include litany of “don’ts,” you can start to wonder 3. APPLES bulgur, buckwheat groats (also known as kasha), millet and quinoa (see below). whether any food is OK to eat. Heart-healthy You know what they say about keeping foods are particularly vexing. the doctor away? An apple a day may not be 8. BEEF EYE OF ROUND In fact, scientists know of a whole quite that powerful, but apples are a good While studies continue to suggest it’s cornucopia of healthy foods you can choose source of fiber, and a medium-sized apple smart to limit your red-meat consumption, from. Not only are there plenty of food has only 80 calories. Red apples are among when you’ve gotta have beef, eye of round is choices that are OK—many foods can the fruits highest in quercetin, which the leanest cut. A three-ounce serving has actually give your body a boost. Your daily researchers are studying for possible nearly half your daily protein and just 160 diet can supply everything from essential antioxidant benefits. But the antioxidants are calories. Beef is a good source of zinc and nutrients to compounds that have been concentrated in the skin, so don’t peel vitamin B6. positively associated with preventing before eating. diseases and minimizing the toll of aging. 9. BLUEBERRIES ♥ These are foods you can enthusiastically say 4. APRICOTS Tufts researchers are studying blue- “yes!” to as part of a well-rounded diet. A good source of vitamins A and C, berries for their antioxidant benefits, This list represents merely a sampling of apricots also are a way to get lycopene, including the possibility that they may boost the variety of foods you can choose in a which has been associated with cancer brain functions that weaken as we age. nutritious diet. (We could pretty much list all prevention in men (see tomatoes, below). Other scientists have found in animal testing fruits and vegetables, for instance, but that 5. ASPARAGUS that blueberries may lower cholesterol levels. Blueberries are also a good source of would make this list either long or boring or With just 25 calories in eight medium- vitamin K, which Tufts researchers suggest both.) This sampling is designed to give you sized asparagus spears, you get 25 percent may play a role in preventing osteoporosis ideas for meals and even snacks that point of your daily vitamin A and 15 percent of and hardening of the arteries. Berries of all your eating plan in the right direction. Any your vitamin C, plus essential folic acid. one food on the list isn’t necessarily “better” sorts are good choices, too: Blackberries, for 6. BANANAS ♥ for you than other choices. example, also deliver vitamin K, along with a A good source of magnesium, which quarter of your daily vitamin C in just a half- Enjoy with our compliments — protects against bone loss and is associated cup. If berries are out of season, try frozen Dave Fryxell, Tufts University with heart health, bananas are also packed berries blended into a smoothie. with potassium. With 422 milligrams of 10. BRAN FLAKES 1. ACORN SQUASH potassium in one medium banana, you’re Research shows that breakfast really is A source of lycopene, folate and vitamins getting almost 10 percent of the 4,700 “the most important meal of the day,” and A and C, winter squash of all sorts also gives milligrams the Institute of Medicine says you bran flakes can get you off to a good start. you dietary fiber. Plus acorn squash, for need. Potassium helps lower blood pressure You’ll get lots of fiber and magnesium — example, is rich in potassium — almost 900 and reduces the risk of kidney stones and plus many other nutrients if you pick a milligrams per cup. bone loss. moderately fortified cereal. Remember to 2. ALMONDS ♥ 7. BARLEY ♥ use skim or low-fat milk and to go easy on A good source of potassium, almonds, Looking for ways to get the whole-grain the sugar. Need a touch of sweetness? Top like other nuts, are low in saturated fat and servings recommended in the new federal your bran flakes with some berries (see high in unsaturated fats. But they’re also dietary guidelines? (Six to 13 servings of above) or other fruit.

32 11. BROCCOLI all fat contains 120 calories a tablespoon — 30 percent of your vitamin C and 15 percent so go easy, and don’t add fat to your diet just You probably don’t need any convincing of calcium. to get more vegetable oil. that broccoli, the classic “good for you” 20. CRANBERRY JUICE vegetable, is a healthy choice. But one of the 15. CANTALOUPE Studies suggest cranberry juice can biggest changes in the government’s new That orange color inside should clue you help ward off urinary-tract infections and food pyramid is an increased emphasis on in that cantaloupe is a great source of beta- might even prevent periodontitis and dark green vegetables — like broccoli and carotene — 100 percent of your daily value gingivitis by keeping bacteria from leafy greens such as spinach and kale. Most in a single cup. Cantaloupe is no slouch in adhering to your teeth and gums. It’s also Americans need to double or triple their the vitamin C count, either, with 113 percent loaded with vitamin C. Look for juice that’s intake of dark green veggies. of daily needs per cup. Other melons such artificially sweetened to avoid added sugar. 12. BROWN RICE as honeydew are also good choices, though (Note that cranberry juice can interact with lower in both beta-carotene and vitamin C. Part of the push to replace processed the blood-thinning medication warfarin to foods with whole grains means eating more 16. CARROTS cause bleeding.) brown rice instead of the white stuff you You knew carrots were good for you, but 21. KALE probably grew up on. Whole grains like did you know how good? Carrots are a prime Here’s another vitamin-A powerhouse as brown rice include the bran and germ of the example of why it’s important to eat a well as a way to up your intake of dark green natural grain that are lost in processing to “rainbow” of different fruits and vegetables vegetables. Like most leafy greens, kale is a make white rice, which contains only the representing the whole spectrum of colors. source of lutein. A mere half-cup of cooked inner endosperm. A lot of good stuff gets This orange option delivers 150 percent of kale also rewards you with almost seven lost in the bargain: Brown rice has almost your daily vitamin A in just half a cup, plus times the recommended daily amount of 10 times as much phosphorus and lesser percentages of a variety of other vitamin K. potassium as white rice, for instance. vitamins and minerals. 22. KIDNEY BEANS ♥ 13. BRUSSELS SPROUTS 17. CAULIFLOWER Rich in fiber, iron and protein, beans of all Another no-surprise inclusion, brussels Don’t let the pasty white color fool you. sorts can be a key ingredient in an sprouts may do your body even more good Cauliflower is a cruciferous vegetable occasional meatless meal. They’re also a than you’d guess. A half-cup of brussels (meaning it’s from the mustard family), source of potassium and magnesium, as sprouts — only about four sprouts — just like broccoli and brussels sprouts. well as folate, which some researchers are delivers 235 micrograms of vitamin K, which Compounds in cruciferous vegetables have studying for potential benefits to the brain. is almost double what the average American been suggested as possible cancer Beans of all types — besides kidney, for gets in a whole day. protectors. In any case, cauliflower packs a instance, black, pinto and navy — are good 14. CANOLA OIL ♥ nutritional punch, with 45 percent of your choices and nutritionally similar. Kidney Here’s where substitution is really the daily vitamin C in just half a cup. beans give you marginally the most protein key: Replacing butter, lard or other saturated 18. CHICKEN BREASTS ♥ and fiber with the fewest calories, but fats with vegetable oils that contain Boneless, skinless chicken breasts offer pintos are tops in folate. Cook your own monounsaturated and polyunsaturated fats great convenience and a good way to get using dried beans, to avoid added salt in can pay dividends for your heart. Canola oil protein (half your daily value in a three-ounce canned beans. is the very lowest in saturated fat, with other serving) without a lot of fat (three grams 23. MACKEREL ♥ choices such as safflower and soybean oil total, including just one gram of saturated Less familiar than other cold-water fish, close behind; the differences are small fat) or calories (140, only 18 percent of them enough that you should pick whichever mackerel is worth adding to your seafood from fat). Broil, bake or grill — don’t fry — to repertoire because it also contains heart- polyunsaturated oil you prefer. Olive oil has keep chicken a smart choice. the highest proportion of monounsaturated healthy omega-3 fatty acids. It’s also a good fat and has earned heart-healthy labeling 19. COLLARD GREENS dietary source of vitamin D, as well as of from the FDA, but it’s not necessarily best. Another option in the dark green selenium, which has antioxidant benefits. Let taste drive your choice: When you want vegetable category, collard greens are (Small children and pregnant women should flavor-free oil, go with polyunsaturated; packed with vitamin A. You’ll get 150 eat mackerel sparingly, however, because of when you want flavor, pick olive or peanut percent of your daily value of A in just a the risk that some fish may have high levels oils. Whichever you choose, remember that half-cup of cooked collard greens, plus of mercury.)

33 24. MILK (NON-OR LOW-FAT) 29. PEANUT BUTTER ♥ on the fatty dressings!), though not as vitamin-packed. Iceberg lettuce has only a That ad campaign urging you to get milk Most of the fat in peanut butter remains fraction of the nutritional value of its greener, is on-target — as long as you stick to skim monounsaturated, making “PB” an option as darker kin. or low-fat milk. Drinking milk makes it easy a sandwich substitute for meats high in to meet the new dietary guidelines’ saturated fat. A two-tablespoon serving has 35. SALMON ♥ recommendation to get the equivalent of eight grams of protein and 25 percent of The classic example of fish with heart- three cups of dairy products daily. In addition your daily niacin. There’s no nutritional healthy omega-3 fatty acids, salmon can be to delivering calcium, fortified milk is among difference between creamy and crunchy broiled, baked or grilled to make a main the best ways to get vitamin D, which your peanut butter — just texture. dish. Keep in mind, however, that even fat body needs in tandem with calcium to build that’s good for you comes with a caloric 30. POPCORN bone strength to prevent osteoporosis. price tag — 160 in a three-ounce serving of Air-popped popcorn (easy on the salt and farmed salmon, 120 for the same portion of 25. OATMEAL ♥ butter!) makes a filling whole-grain snack. wild Atlantic salmon. If you occasionally opt Besides the benefits of starting your day A cup of plain air-popped popcorn has just for canned salmon with the bones, you’ll with a healthful breakfast, and besides the 30 calories. also get calcium in the bargain. fact that oatmeal helps you get whole 31. PORK LOIN ♥ grains, oatmeal has been shown to lower 36. SARDINES ♥ cholesterol. You can also lower blood This is the leanest cut of “the other white Another fatty fish that’s rich in omega- cholesterol with oat bran and with cold cereal meat” (actually a red meat). A three-ounce 3s, sardines are also a good source of made from oatmeal or oat bran. (Watch out serving delivers 32 percent of daily protein vitamin D and (eaten with the bones) for instant oatmeal packages, though, which needs with just 2.5 grams of saturated fat calcium. typically contain lots of extra sugar.) and 120 calories. Because it’s so lean, be careful to cook pork loin to the safe internal 37. SHREDDED-WHEAT CEREAL 26. OKRA temperature of 160 degrees but not beyond. In addition to the benefits of a healthy A food better known in southern states, Use a meat thermometer, and remove from breakfast, shredded wheat cereal gives you okra is a good source of folate and also the heat 5–10 degrees before it’s done, as a good start on your daily goal of 400 gives you 20 percent of your vitamin C the pork will keep cooking while “resting.” milligrams of magnesium, which has been needs in just half a cup. A recent study Even if still pink in the center, pork is safe to associated with reduced risk of diabetes. suggests that okra, along with eggplant and eat at 160 degrees. Just two regular-sized biscuits have 80 whole grains, among other foods, can be milligrams of magnesium. 32. PRUNES part of a cholesterol-lowering diet. (Breading 38. SPINACH and frying okra, southern-style, adds so Prunes aren’t just your mom’s Popeye was onto something here. many calories that it offsets any health constipation cure. A half-cup of dried prunes Besides being the quintessential dark leafy benefits, however!) does provide a quarter of your daily fiber, sure, but you’re also getting potassium and green and rich in vitamins A and K (plus 27. ORANGES some folate), spinach is also packed with vitamin A, plus vitamin B6 and powerful Of course, you already know about the antioxidants. lutein. Researchers have found that lutein benefits of eating from the “sunshine consumption is associated with a reduced tree” — notably, getting more than a day’s 33. QUINOA risk of macular degeneration, the leading dose of vitamin C in just one navel orange. Another whole-grain option (see the cause of vision loss and blindness in people Oranges also are a pretty good source of listing for barley for more), quinoa is age 65 and older. catching on as an alternative to refined potassium. 39. STRAWBERRIES grains and other mealtime “starch” choices. 28. PEACHES Like most berries (see blueberries, Remember to rinse it well before cooking. Peaches and similar fruit such as above), grapes and prunes, strawberries nectarines deliver modest amounts of 34. ROMAINE LETTUCE contain anthocyanins, powerful antioxidants vitamins (especially A and C), niacin and This salad staple counts toward your that improve circulation and may have other minerals (particularly potassium), while daily goal of eating more leafy greens, and health benefits. Strawberries are also a good satisfying your craving for something delivers vitamin A and C along with a tasty choice for folate and vitamin C. sweet — all at a tiny price in calories (only crunch. Boston, Bibb and red or green leaf 40 in a medium-sized peach). lettuces are other good salad choices (easy

34 40. SWEET POTATOES 45. TURKEY BREAST ♥ 50. WHOLE-GRAIN PASTA Try sweet potatoes instead of regular Like its poultry cousin, chicken, skinless If you’ve been put off by tough, grainy potatoes. They have more beta-carotene (a turkey breast delivers plenty of protein — 38 whole-wheat pasta in the past, it’s time to whopping 25,000 IU in one baked sweet percent of daily needs in a three-ounce give it another try. In the first quarter of potato with skin), vitamin C, folate, calcium portion — without a lot of fat (five grams, 2005 alone, more than 28 new and manganese than white spuds. including 1.5 grams of saturated fat). Turkey wholegrain pastas were introduced, taking advantage of new technology to make 41. TEA is also rich in B vitamins and selenium. Besides making a good main dish, sliced tastier products. What to drink with all this? Try a nice cup turkey breast can substitute for processed of freshly brewed tea instead of a sugary 51. YOGURT (NON- OR LOW-FAT) meats in your sandwiches. soft drink. Research has suggested many Here’s a delicious way to get your daily possible benefits from the phytonutrient 46. WALNUTS ♥ dairy. Besides calcium, yogurt gives you antioxidants in tea, called catechins; the Remember what we said about protein, magnesium and a variety of strongest scientific evidence is for reducing almonds? The same goes for walnuts: vitamins including B12. It’s even been linked heart disease. There’s not a significant They’re low in saturated fat, free of to better breath. (Yogurt doesn’t have difference in antioxidants between cholesterol and high in unsaturated fats, but vitamin D, however, so it’s no substitute for caffeinated and decaffeinated tea, but we’re only a good idea when replacing foods milk.) Instead of sugared varieties, control not talking about herbal teas here. Iced tea packed with saturated fat. Although a calories by adding your own fresh fruit to contains only low concentrations of quarter-cup of walnuts contains four grams plain, low-fat yogurt. of protein, you’re also consuming 160 catechins, however. Premixed iced-teas and www.tuftshealthletter.com ready-to-drink teas are likewise low in calories. Walnuts are relatively high in Reprinted from Tufts University Health & Nutrition antioxidants — but laden with sugar. essential minerals and in folate. Letter. Copyright 2009 Belvoir Media Group, LLC. 42. TOFU 47. WATERMELON Tufts Health & Nutrition Letter is published monthly (12 issues) by Belvoir Media Group, The range of benefits hoped for from tofu A good source of lycopene, a cup of LLC., 800 Connecticut Avenue, Norwalk, CT and other soy products has been called into watermelon also gives you about 20 percent 06854-1631. Subscriptions are $36 annually. question, but tofu can still be a smart of your daily vitamin C and 15 percent of (800) 274-7581. www.tuftshealthletter.com. substitute for meat in your meal planning. vitamin A, with only 45 calories. It’s a good source of protein and calcium if 48. WHITE FISH ♥ it’s been prepared with calcium carbonate. While fatty fish such as salmon have the Blood & Marrow 43. TOMATOES added benefit of omega-3s, white fish such Men have been gobbling tomatoes ever as flounder, cod and sole are also Transplant News since research suggested that the lycopene outstanding choices. A three-ounce serving Blood & Marrow Transplant Newsletter therein may be protective against prostate of cod, for example, offers 30 percent of is published four times annually by cancer; a recent study points to a similar your daily protein with only 68 calories and BMT InfoNet. effect for pancreatic cancer in men. less than one fat gram. Fish sticks and fish To subscribe, contact: Tomatoes are also a good choice for lutein, sandwiches don’t count as healthy and a single medium tomato contains half choices, however—go with baked, broiled BMT InfoNet your daily value of vitamin C. or grilled fish. 2900 Skokie Valley Road Suite B 44. TUNA ♥ 49. WHOLE-GRAIN BREAD Highland Park, IL 60035 Besides being a good choice for The new federal dietary guidelines encourage Americans to consume the omega-3s, tuna is high in vitamins B6 and Toll free: 888-597-7674 whole-grain equivalent of at least three one- B12 as well as protein. If you buy canned Tel: 847-433-3313 ounce slices of bread daily. Switch to whole- tuna, opt for waterpacked, not oil-, and Fax: 847-433-4599 grain bread to get started—but check the resist the impulse to mix it with fatty mayo; label to make sure the first ingredient is a E-Mail: [email protected] try low-fat mayo or mayonnaise mixed with whole grain. Don’t be fooled by terms such Web: www.bmtinfonet.org low-fat yogurt. as “multi-grain,” “100 percent wheat,” “cracked wheat” or “seven-grain.”

35 BONE MARROWSUBMITTED TRANSPLANTATION FROM USA Patient Referrals Myelodysplastic syndromes can be Be a Bone Marrow Donor difficult to diagnose and treat. It is For those patients diagnosed with a fatal blood disorder, bone marrow important for both patients and their transplantation (BMT) is often the only chance of survival. Related donors provide families to know that optimal treatment is suitable matches only 33 percent of the time. This leaves nearly 70 percent of patients available and that quality of life can be without a match. The need is especially critical in racial and ethnic minority groups. enhanced. Registering as a donor is simple. A blood sample is all you need to enter your If you would like information about tissue type into the National Marrow Donor Program (NMDP) computerized registry. treatment options, research, or quality of If you are in good health and between the ages of 18 and 55, you can contact life, we would be glad to help. The NMDP at 1-800-MARROW-2. They will send additional information, including the Foundation offers a variety of patient NMDP center nearest you. services, including preferential referrals to the Foundation’s MDS Centers of Excellence. Give the Gift of Life! We can also help identify physicians and Other sites of interest: centers to support you if you are travelling and need assistance. ASBMT™ American Society for Blood and Marrow Transplantation: www.asbmt.org Please contact us at: 1-800-MDS-0839 International Bone Marrow Transplant Registry: Outside the US please call: www.isbmtr.org +44 20 7733 7558 National Marrow Donor Program®: You can visit our website at: www.marrow.org http://www.mds-foundation.org. Blood & Marrow Transplant Information Network: www.bmtinfonet.org Sign Up for MDS Blood & Marrow Transplant Resources: www.BMTresources.org Essentials E-News Bone Marrow and Cord Blood Transplantation: The Foundation has created a http://bloodcell.transplant.hrsa.gov new electronic E-Newsletter to provide healthcare professionals Over 140 Things You Need to Know about Your Autologous Bone Marrow or Stem and patients from around the Cell Transplant is available online at www.BMTresources.org or call 414-870-4850, world with timely information in a ISBN# 0-9768060-0-2/Price: $11.95. Contains over 140 invaluable tips to help cost-effective manner. The MDS transplant patients sail through their procedures. Essentials E-Newsletter is the electronic version of our quarterly newsletter. Receive up-to-date information on clinical trials, research, and news by simply Thank You to Our subscribing online at: Pharmaceutical Supporters www.mds-foundation.org We would like to thank our pharmaceutical supporters for their commitment to the Foundation and its work. They have contributed in the form of educational grants, which maintains not only this newsletter but also the development of the MDS homepage on the World Wide Web, the Center of Excellence program, continuing medical education programs, the Patient Registry, and the dissemination of patient information.

36 Would you like your treatment center to become part of the referral system for MDS patients and be designated as a Center of Excellence? To be recognized as a Center of Excellence, an institution must have the following: ■ An established university (or equivalent) program ■ Ongoing research, including ■ Documentation of peer-reviewed publications in the field ■ Recognized morphologic expertise in MDS Institutional Review ■ The ability and intention to register patients in the MDS ■ Available cytogenetics and/or molecular genetics ■ Board–approved clinical trials International Registry database Please contact the Foundation for further information and an application form for your center. The following centers have qualified as MDS Centers of Excellence:

UNITED STATES University of South Florida University of Maryland NEW JERSEY H. Lee Moffitt Cancer Center Greenebaum Cancer Center ALABAMA The Cancer Center of Hackensack and Research Institute Baltimore, Maryland University Medical Center University of Alabama Tampa, Florida Maria R. Baer, MD Hackensack, New Jersey at Birmingham Alan F. List, MD Ivana Gojo, MD Stuart Goldberg, MD Comprehensive Cancer Center Birmingham, Alabama GEORGIA MASSACHUSETTS NEW MEXICO James M. Foran, MD Emory Winship Cancer Institute Dana-Farber Cancer Institute University of New Mexico Emory University School of Medicine Boston, Massachusetts ARIZONA Health Sciences Center Atlanta, Georgia David P. Steensma, MD/ Albuquerque, New Mexico Mayo Clinic Hospital Amelia Langston, MD Richard M. Stone, MD Robert Hromas, MD Phoenix, Arizona Tufts University Ruben A. Mesa, MD/James L. Slack, MD ILLINOIS School of Medicine NEW YORK University of Arizona Loyola University Chicago Tufts Medical Center Albert Einstein College of Arizona Cancer Center Cardinal Bernardin Cancer Center Boston, Massachusetts Medicine Cancer Center Tucson, Arizona Maywood, Illinois Kellie Sprague, MD Bronx, New York Daruka Mahadevan, MD, PhD Scott E. Smith, MD, PhD Amit Verma, MD MICHIGAN CALIFORNIA Robert H. Lurie Memorial Sloan-Kettering Comprehensive Cancer Center Barbara Ann Karmanos Cancer Center Cedars-Sinai Medical Center of Northwestern University Cancer Institute New York, New York UCLA School of Medicine Feinberg School of Medicine Wayne State University Stephen D. Nimer, MD Los Angeles, California Detroit, Michigan Chicago, Illinois Mount Sinai H. Phillip Koeffler, MD Charles A. Schiffer, MD Olga Frankfurt, MD School of Medicine City of Hope National Medical Center William Beaumont Hospital Rush University New York, New York Duarte, California Cancer Center Medical Center Lewis R. Silverman, MD Stephen J. Forman, MD Royal Oak, Michigan New York Medical College/ Chicago, Illinois Ishmael Jaiyesimi, MD Stanford University Medical Center Stephanie A. Gregory, MD Westchester Medical Center Stanford, California Jamile Shammo, MD MINNESOTA Zalmen A. Arlin Cancer Center Peter L. Greenberg, MD Valhalla, New York University of Chicago Mayo Clinic Karen Seiter, MD UCLA Center for Health Science Medical Center Rochester, Minnesota UCLA School of Medicine Chicago, Illinois Mark R. Litzow, MD North Shore University Hospital Los Angeles, California Lake Success, New York Richard A. Larson, MD University of Minnesota Gary J. Schiller, MD Steven L. Allen, MD Medical Center, Fairview University of Southern California INDIANA University of Minnesota Roswell Park Cancer Center Keck School of Medicine Indiana University Medical School Buffalo, New York Los Angeles, California Medical Center Minneapolis, Minnesota James E. Thompson, MD Allen S. Yang, MD, PhD Indianapolis, Indiana Erica D. Warlick, MD St. Vincent’s Larry Cripe, MD Comprehensive Cancer Center FLORIDA MISSOURI New York, New York All Children’s Hospital MARYLAND Washington University Azra Raza, MD St. Petersburg, Florida School of Medicine Johns Hopkins University University of Rochester Gregory Hale, MD Siteman Cancer Center School of Medicine Cancer Center St. Louis, Missouri Mayo Clinic Baltimore, Maryland John F. DiPersio, MD, PhD Rochester, New York Jacksonville, Florida Steven D. Gore, MD John M. Bennett, MD Charles S. Hesdorffer, MD Alvaro Moreno-Aspitia, MD NEBRASKA Weill Medical College University of Florida National Heart, Lung, University of Nebraska of Cornell University Shands Hospital and Blood Institute Medical Center New York Presbyterian Hospital Gainesville, Florida Bethesda, Maryland Omaha, Nebraska New York, New York Christopher R. Cogle, MD Elaine Sloand, MD Lori Maness, MD Eric J. Feldman, MD

37 NORTH CAROLINA University of Texas AUSTRALIA University of Toronto Duke University Medical Center MD Anderson Cancer Center Peter MacCallum Hospital for Sick Children Durham, North Carolina Houston, Texas Cancer Institute Toronto, Ontario, Canada Carlos M. deCastro, MD Guillermo Garcia-Manero, MD University of Melbourne Yigal Dror, MD Hagop Kantarjian, MD Wake Forest University East Melbourne, Australia School of Medicine University of Texas John F. Seymour, MD CHINA Southwestern Medical Center Comprehensive Cancer Center University of Tasmania Institute of Hematology Dallas VA Medical Center Winston-Salem, North Carolina Royal Hobart Hospital and Blood Diseases Hospital Dallas, Texas Bayard L. Powell, MD Hobart, Tasmania, Australia Chinese Academy of Medical Sciences WASHINGTON Raymond M. Lowenthal, MD Tianjin, China OHIO Zhijian Xiao, MD Fred Hutchinson Cleveland Clinic Foundation Cancer Research Center AUSTRIA Taussig Cancer Center CROATIA University of Washington University Hospital Cleveland, Ohio of Innsbruck University Hospital Center Zagreb Jaroslaw Maciejewski, MD, PhD Seattle Cancer Care Alliance Seattle, Washington Innsbruck, Austria School of Medicine Zagreb, Croatia OREGON Joachim Deeg, MD Reinhard Stauder, MD Elihu Estey, MD Boris Labar, MD, PhD Oregon Cancer Center at Oregon University of Vienna Ranka Serventi-Seiwerth, MD Health and Science University Vienna, Austria WASHINGTON, DC Portland, Oregon Peter Valent, MD CZECH REPUBLIC Georgetown University Hospital PENNSYLVANIA Lombardi Comprehensive BELGIUM Institute of Hematology & Blood Transfusion The Western Pennsylvania Cancer Center AZ Sint-Jan AV Prague, Czech Republic Cancer Institute Washington, D.C. Brugge, Belgium Jaroslav Cermák, MD, PhD Pittsburgh, Pennsylvania Catherine Broome, MD Dominik Selleslag, MD James M. Rossetti, DO Khaled El-Shami, MD, PhD University Hospital Leuven DENMARK Thomas Jefferson University WISCONSIN Leuven, Belgium Odense University Hospital Kimmel Cancer Center Michel Delforge, MD, PhD The University of Southern Denmark Medical College of Wisconsin Philadelphia, Pennsylvania Odense, Denmark Emmanuel C. Besa, MD Bone Marrow BRAZIL Transplant Program Gitte Birk Kerndrup, MD University of Pennsylvania AC Camargo Hospital– Rigshospitalet National Cancer Center Milwaukee, Wisconsin Cancer Center University Hospital Philadelphia, Pennsylvania Parameswaran Hari, MD São Paulo, Brazil Copenhagen, Denmark Selina Luger, MD University of Wisconsin Luiz Fernando Lopes, MD, PhD Lars Kjeldsen, MD, PhD UPMC Cancer Centers Madison Medical School Hemocentro da UNICAMP University of Pittsburgh Madison, Wisconsin University of Campinas University of Århus Cancer Institute Mark B. Juckett, MD Campinas, Brazil The University Hospital Pittsburgh, Pennsylvania Irene Lorand-Metze, MD Århus, Denmark Johan Lanng Nielsen, MD, PhD Anastasios Raptis, MD OUTSIDE THE Servico de Hematologia do TENNESSEE UNITED STATES Hospital das Clinicas FRANCE da Faculdade de Medicina da St. Jude Children’s Centre Henri Becquerel AFRICA Universidade de São Paulo Research Hospital Rouen University Constantiaberg Medi-Clinic São Paulo, Brazil Memphis, Tennessee School of Medicine Stellenbosch University Elvira R.P.Velloso, MD, PhD Vanderbilt University and Tygerberg Academic Hospital Rouen, France Medical Center Universidade Federal de Ceará Aspasia Stamatoullas, MD Cape Town, South Africa Ceará, Brazil Nashville, Tennessee Peter Jacobs, MD, PhD Centre Hospitalier Madan Jagasia, MD Silvia Maria M. Magalhães, MD, PhD Hôpital Aziza Othmana Universitaire (CHU) de Angers Stephen Strickland, MD Universidade Federal Service des Maladies du Sang Tunis, Tunisia de São Paulo TEXAS Balkis Meddeb, MD Angers, France São Paulo, Brazil Norbert Ifrah, MD Cancer Care Centers of South Texas University of Cape Town Maria de Lourdes Chauffaille, MD, PhD San Antonio, Texas Groote Schuur Hospital Centre Hospitalier Universitaire CANADA Roger Lyons, MD Cape Town, South Africa (CHU) de Grenoble Cancer Therapy & Research Center Nicolas Novitzky, MD, PhD Princess Margaret Hospital Grenoble, France Institute for Drug Development Toronto, Ontario, Canada Jean-Yves Cahn, MD San Antonio, Texas ARGENTINA Karen Yee, MD Centre Hospitalier Swaminathan Padmanabhan, MD Sanatorio Guemes Toronto Sunnybrook Universitaire (CHU) de Limoges Southwest Regional Cancer Center Buenos Aires University Regional Cancer Centre Hôpital Dupuytren Austin, Texas Buenos Aires, Argentina Toronto, Ontario, Canada Limoges, France Richard Helmer, III, MD Marcelo Iastrebner, MD Richard A. Wells, MD Dominique Bordessoule, MD

38 Centre Hospitalier Albert-Ludwigs- ISRAEL Vrije Universiteit Medical Center Universitaire de Nancy Universität Freiburg Tel-Aviv Sourasky Medical Center Amsterdam, The Netherlands Nancy, France Freiburg, Germany Tel-Aviv, Israel Gert J. Ossenkoppele, MD, PhD Agnés Guerci-Bresler, MD, PhD Michael Lübbert, MD, PhD Moshe Mittelman, MD POLAND Hôpital Avicenne/ Universität Hamburg Jagiellonian University University Paris XIII Hamburg, Germany ITALY Collegium Medicum Bobigny, France Nicolaus Kröger, MD, PhD Centro di Riferimento Pierre Fenaux, MD Oncologico di Basilicata (CROB) Kraków, Poland Universitätsklinikum Rionero in Vulture (PZ), Italy Aleksander Skotnicki, MD, PhD Hôpital Claude Huriez, Carl Gustav Carus Pellegrino Musto, MD CHU Lille Service Dresden, Germany PORTUGAL des Maladies du Sang Istituto di Ematologia Uwe Platzbecker, MD Hospital de Santa Maria Lille, France Universita’ Cattolica Sacro Cuore University Children’s Hospital Lisbon, Portugal Bruno Quesnel, MD Roma, Italy Freiburg, Germany Joao F. Lacerda, MD Hôpital Cochin/ Giuseppe Leone, MD Charlotte Niemeyer, MD Maria Teresa Vosa, MD University Paris V ROMANIA University of Cologne Paris, France University of Florence Fundeni Clinical Institute Francois Dreyfus, MD Cologne, Germany Azienda OSP Careggi Karl-Anton Kreuzer, MD Bucharest, Romania Hôpital Saint Louis/ Florence, Italy Radu Gologan, MD, PhD University Paris VII Universitätsklinikum Valeria Santini, MD Paris, France Benjamin Franklin University of Pavia Medical School SAUDI ARABIA Berlin, Germany Christine Chomienne, MD, PhD Pavia, Italy King Faisal Specialist Olaf Hopfer, MD Mario Cazzola, MD Institut Paoli-Calmettes Hospital & Research Centre Marseille, France University Hospital Mannheim University Tor Vergata Riyadh, Saudi Arabia Norbert Vey, MD Mannheim, Germany Ospedale S. Eugenio Mahmoud Deeb Aljurf, MD Wolf-Karsten Hofmann, MD, PhD Roma, Italy King Khaled University Hospital GERMANY Elisabetta Abruzzese, MD, PhD GREECE King Saud University Georg-August-Universität Riyadh, Saudi Arabia Patras University Hospital JAPAN Göttingen Ak Almomen, MD Patras, Greece Kyoto University Hospital Göttingen, Germany Nicholas C. Zoumbos, MD, PhD Kyoto, Japan Detlef Haase, MD, PhD SINGAPORE University General Hospital Takashi Uchiyama, MD Hannover Medical School Singapore General Hospital Attikon Nagasaki University Hospital Medizinische Hochschule Singapore Athens, Greece School of Medicine Hannover Lay-Cheng Lim, MD Theofanis Economopoulos, MD Atomic Bomb Disease Institute Hannover, Germany Nagasaki City, Japan Arnold Ganser, MD University of Athens SPAIN Laikon Hospital Masao Tomonaga, MD Heinrich-Heine Universität Hospital Universitario de Salamanca Athens, Greece Nippon Medical School Düsseldorf University Hospital Salamanca, Spain Nora Viniou, MD Tokyo, Japan Düsseldorf, Germany Consuelo del Cañizo, MD, PhD Kiyoyuki Ogata, MD, PhD Ulrich Germing, MD HUNGARY Hospital Universitario La Fe Saitama Medical School Hospital Valencia, Spain Johann Wolfgang Goethe Semmelweis University Morohongo, Iruma, Japan Miguel A. Sanz, MD, PhD Universität School of Medicine Akira Matsuda, MD Frankfurt Main, Germany Budapest, Hungary Hospital Universitario Tokyo Medical College MLL Münchner Judit Várkonyi, MD, PhD Vall d’Hebron Laboratorio Tokyo, Japan del Citologia-Citogénetica Leukämielabor Kazuma Ohyashiki, MD Munich, Germany INDIA Barcelona, Spain Torsten Haferlach, MD Army Hospital KOREA Maria Teresa Vallespi-Sole, MD, PhD (Research & Referral) Saarland University Catholic Blood and Marrow New Delhi, India SWEDEN Medical Center Transplantation Center Lt Col (Dr.) Deepak Kumar Mishra, MD Karolinska Institutet Homburg/Saar, Germany The Catholic University of Korea Huddinge University Hospital Ulrich Mahlknecht, MD, PhD Tata Memorial Hospital Seoul, Korea Mumbai, India Yoo-Jin Kim, MD Stockholm, Sweden St. Johannes Hospital Purvish Parikh, MD Eva Hellström-Lindberg, MD, PhD Heinrich-Heine Universität THE NETHERLANDS Duisburg, Germany IRELAND University Medical Center TAIWAN Carlo Aul, MD, PhD Adelaide and Meath Hospital Nijmegen St. Radboud National Taiwan University Hospital Dublin, Ireland Nijmegen, The Netherlands Taipei, Taiwan Helen Enright, MD Theo J.M. de Witte, MD, PhD Hwei-Fang Tien, MD, PhD

39 Information on Clinical Trials

THAILAND International Clinical King Chulalongkorn New Research Memorial Hospital Trials: An Update Pathumwan, Bangkok, Thailand Protocol Listings Tanin Intragumtornchai, MD NATIONAL CANCER INSTITUTE TRIALS The MDS Foundation wants you to TURKEY As we go to press the National Cancer know about clinical trials of Ankara University Institute (NCI) has listed more than 100 investigational treatment options for School of Medicine Hospital clinical trials that focus on myelodysplastic patients with MDS and has updated its Ankara, Turkey syndromes. Full study information on these Osman Ilhan, MD International Clinical Trials list on our trials is available at www.cancer.gov. This website and for distribution. information includes basic study information, UKRAINE Please contact us for a detailed listing study lead organizations, study sites, and Research Center for featuring new protocols: Radiation Medicine contact information. To access the information: Kiev, Ukraine Website: www.mds-foundation.org ■ Dimitry Bazyka, MD Log on to www.cancer.gov Email: ■ Click on “Search for Clinical Trials” [email protected] UNITED KINGDOM or call 800-MDS-0839 and the current King’s College Hospital ■ Click on “Type of Cancer” and type in University of London ‘myelodysplastic syndromes’ clinical trials will be sent to you. London, England ■ Hit search Clinical trials often have very specific Ghulam J. Mufti, MD eligibility requirements. Please talk with Leeds General Infirmary This search will provide you with all the your doctor to help decide which, if any, The Leeds Teaching Hospitals trials currently underway in MDS. You may trials might be right for you. Leeds, England also sort by trials that only focus on treatment Please note that the information is David T. Bowen, MD or trials that only focus on supportive care. provided strictly as a resource and is Addenbrookes Hospital To view listings of additional studies Cambridge University Hospitals not an endorsement of any physician, NHS Foundation Trust you can log onto www.clinicaltrials.gov. institution, or treatment. Cambridge, England You can also contact 1-800-4-CANCER Alan J. Warren, PhD, FRCP, FRCPath for more information. Queen Elizabeth Hospital If you are an MDS patient, you may wish Phase II. Patients with the disease receive University Hospital Birmingham, to discuss a trial with your primary treating the drug at dose levels determined in the NHS Trust physician to see if you qualify as a candidate. earlier phase. The phase II trial begins to Birmingham, England determine the effectiveness of the drug and Clinical trials study new interventions Charles Craddock, MD provides more information about its safety. Radcliffe Hospitals and (drugs or procedures) to evaluate their safety University of Oxford and effectiveness in humans. Trials follow Phase III. The drug is tested alone or Oxford, England a careful set of steps, allowing for the against an approved standard drug. The Paresh Vyas, MD systematic gathering of information to typical phase III trial enrolls a large number Royal Bournemouth Hospital answer questions and confirm hypotheses of patients. If it is a comparison trial, patients Bournemouth, England that were formed earlier, in either laboratory may be randomly assigned to receive either Sally Killick, MD experiments or preliminary trials. the new drug or the standard intervention. Aberdeen Royal Infirmary Phase IV. In phase IV the drug, already Aberdeen University A clinical trial falls into one of four phases: School of Medicine approved by the FDA and available to the Foresterhill, Aberdeen, Scotland Phase I. This is the first time a drug is used public, undergoes continued evaluation. Dominic Culligan, MD in humans. The trial is designed to determine The phase IV designation is rare. University Hospital of Wales dosage, route of administration (oral, Some trials—screening studies evaluating Cardiff, Wales intravenous, or by injection), and schedule of supportive care or prevention — are not Jonathan Kell, MD administration (how many times a day or conducted in phases. In these trials a group week). In this phase researchers also begin to following a certain disease combating determine the drug’s safety. The phase I trial strategy, such as a detection method, is is normally conducted in healthy adults and compared to a control group. enrolls only a small number of people.

40 A CRITICAL NEW EPOANE3018 Study need for blood transfusions and increase the CLINICAL TRIAL Anemia (a drop in the body’s red-blood- hemoglobin level in patients with early stage cell count) is the most common blood MDS and anemia. Myelodysplastic abnormality in the early stages of MDS. Treatments that can reduce or delay the need Who qualifies for this study? Syndromes (MDS) for blood transfusions may improve and To qualify for this study you must: and Anemia: extend better quality of life for persons with ■ Be at least 18 years of age early stage MDS. More research is needed to Potential New ■ Have been diagnosed with MDS evaluate such treatments and to obtain FDA ■ Treatments Through approval for use in patients with early disease Have an International Prognostic Scoring who are not yet transfusion dependent. Systems (IPSS) score of Low- to Inter- Clinical Research mediate-1 Risk Disease In the EPOANE3018 study, epoetin alfa ■ The MDS Foundation is active in will be evaluated in patients with early stage Have anemia (a hemoglobin count of supporting MDS patients including MDS, who are not yet treatment dependent, 10 g/dL or below) maintenance of access to therapy with to see if it can delay the need for trans- ■ Not transfusion dependent (<4 red blood erythropoietin-stimulating agents (ESAs). fusion. Transfusion dependence is defined cell units during a consecutive 8-week Johnson & Johnson Pharmaceutical Research as the requirement of an average of two period) in the past 6 months and Development (J&JPRD) has structured units of adult sized red blood cell units per the EPOANE3018 protocol with input month. Patients with early stage MDS who What can you expect if you are from the FDA to demonstrate the benefit have no or low red blood cell transfusion eligible and enroll in this study? and safety of epoetin alfa treatment in requirements are included in this study ■ MDS patients. Before any study related procedures are because there currently are limited performed, the study doctor will discuss Research to date suggests that epoetin treatment options for MDS patients who the study in detail with you, including any alfa is effective in reducing the need for red have anemia but are not requiring red blood potential risks or benefits. blood cell transfusions in patients with cell transfusions on a regular basis. early stages of MDS. The purpose of this ■ If you participate, you will be randomly Research to date suggests that epoetin study is to explore whether it will decrease assigned (by chance, like flipping a coin) alfa is effective in reducing the need for the need for blood transfusions and to one of three investigational treatment transfusions in patients with early stages of increase the hemoglobin level in patients schedules: MDS. Epoetin alfa is a manufactured form of with early stage MDS and anemia. While – Epoetin alfa 40,000 IU (1 mL) given the human hormone erythropoietin, which the Centers for Medicare and Medicaid once a week by subcutaneous (under stimulates the production of red blood cells. Services (CMS) did not make MDS a part of the skin) injection Epoetin alfa is distributed in the United their original decision due to the ‘definition’ – Epoetin alfa 80,000 IU (2 mL) given States, the European Union, and other that MDS is not cancer, the Foundation once a week by subcutaneous injection strongly feels that this will not be the case countries under several brand names including ® ® ® – Placebo given once a week by sub- in the long term. PROCRIT , EPREX , and ERYPO for the treatment of other related disease conditions. cutaneous injection. Half of this group Many MDS patients rely on ESAs for If you are a patient with early stage MDS will be assigned to 1 mL dosing and the the management of their disease. This other half will be assigned to 2 mL dosing. trial will play an important part in and anemia who is not yet transfusion ■ You will visit the study center each week decisions that will determine the future dependent or a health professional caring during a 48-week Study Treatment Phase treatments for MDS patients. The use of for a patient, and would like to receive for blood tests, assessment of disease this supportive and comprehensive data more information about this study, please progression, to receive study drug and can then serve to have a positive influence refer to the contact information at the end of this article. periodic measurement of iron stores. over future decisions by CMS or to possibly change the labeling for ESAs to ■ You may continue to receive the include approval for use in bone marrow What is the purpose of this study? investigational study drug beyond the failure diseases by the FDA. The purpose of the EPOANE3018 clinical 48-weeks if you do not require trans- research study is to explore the use of fusions and your doctor feels that you are epoetin alfa, to see if it will decrease the benefiting from the treatments.

41 ■ All patients will receive current standard of care for anemia management. About the Foundation The Centers of Excellence Program designates institutions that meet the ■ You will continue to have safety eval- Who Are We? highest standards for diagnosis, treatment, 1 uations for 4 /2 years following study The Myelodysplastic Syndromes Foundation, and patient care. These Centers form participation. These visits for the most part Inc., was established in 1994 by an the referral base for patients seeking should coincide with routine scheduled international group of physicians and first or second opinions and/or additional visits to your doctor for your condition. researchers to provide education about treatment options from experts in MDS. The For doctors caring for a patient(s) MDS to physicians and patients, support for Foundation provides patients with a priority with early stage MDS who may be MDS research, patient support and advocacy. referral to any Center of Excellence. a candidate(s) for this study: During the past decade, we have Patient Advocacy groups are being formed independently solicited funding for ten worldwide and information is available that ■ Approximately 450 subjects will be international symposia that have been assists MDS patients and their loved ones randomly assigned to one of the study attended by over 7,000 individuals — to understand these diseases and the drug schedules physicians and patients. These symposia treatment options that are available. ■ The Study Phases include: are held biannually and have greatly improved our knowledge of these How Can You Help? – Pre-randomization (Screening) Phase: disorders and continue to provide Funding for the Foundation comes from Day 1 to 14 physicians worldwide with the most up-to- pharmaceutical companies, Foundation – Study Treatment Phase: date information on research in MDS. The memberships, memorials and donations Day 1/Week 1 to Week 48 10th International Symposium will be held from private individuals. While we have – Safety Assessment Phase, consisting of: in Patras, Greece May 6–9, 2009. come a long way in the 15+ years since At the Third International MDS meeting, the Foundation was established we have a ● Short Term Safety (Week 52) or attended by epidemiologists, pediatricians long way to go. Funding is the base for Early Withdrawal from treatment visit (yes, this does occur in children), realizing the Foundation’s research and ● Long Term Safety Assessments until pathologists, hematologists, oncologists, education goals. progression to AML, death, or the and bone marrow transplantation experts, a The MDS Foundation is a publicly clinical cutoff is reached, which-ever survey indicated a very strong interest in, supported not-for-profit organization, occurs first and a great need for, developing a exempt from federal income tax under ■ An Independent Data Monitoring Com- permanent working group of scientists and section 501(C)(3) of the IRS code. mittee (IDMC) will periodically review patient advocates. Up until that time, no How Can We Help You? overall safety data throughout the study. formal working group was devoted to these syndromes. The MDS Foundation was born. Please do not hesitate to contact the ■ An Independent Central Pathology Foundation if you have any questions. Reviewer will review bone marrow What Does the Foundation Do? samples and peripheral blood counts for The Foundation works to maintain an MDS International Headquarters: assessment of disease progression. international information network to share US Patient Liaison new research and new treatment options 36 Front Street, PO Box 353 To learn more about participating in as rapidly as possible, to provide Crosswicks, NJ 08515 the EPOANE3018 study or to refer a information and educational support for Within the US: 1-800-MDS-0839 patient to this study, please contact the both physicians and patients, and, Outside the US: 609-298-6746 MDS Foundation by E-mailing us at: ultimately, to provide funding and Fax: 609-298-0590 [email protected] or by calling oversight for international studies of [email protected] our toll free EPOANE3018 study MDS. Currently the Foundation supplies EU Office: number: 1-888-813-1260 (within the patients, physicians, and other interested US) or 609-298-7741 (outside of the US). parties with information in the form of a EU Patient Liaison The Rayne Institute We look forward to talking with you and quarterly newsletter, The MDS News and 123 Coldharbour Lane working together to find new and better MDS Essentials our e-newsletter. The Denmark Hill Campus treatments for patients with early stage MDS. Foundation’s website includes patient and physician information. Our web address is London SE5 9NU, UK http:/www.mds-foundation.org. Tel/Fax: +44 20 7733 7558

42 Educational Resources

Understanding MDS: A Primer for Practicing Clinicians Visit www.mds-foundation.org and click on The MDS Foundation Resource Center to take advantage of this comprehensive program, and other informative programs coming soon, designed to provide you with tools and information that will assist you in administering the best care to your patients.

Segment 1 – The Past & Present in MDS Segment 1 provides insight into the history of MDS, development of the MDS classification and prognostic systems, and a glimpse into the future of MDS diagnosis, research and treatment.

Segment 2 – Clinical Presentation, Diagnosis & Pathology Segment 2 provides insight into the clinical picture of adult and pediatric MDS, primary and secondary MDS, FAB and WHO Classification system, and rationale for the proposed MDS pediatric classification system.

Segment 3 – Ineffective Hematopoiesis: Considerations in Diagnosis & Treatment Segment 3 provides insight into the pathogenic mechanisms that contribute to the development of MDS, including the altered bone marrow microenvironment of MDS in terms of cells, cytokines, growth factors, receptors, and microvasculature; dyserythropoiesis in MDS, and therapeutic targets and approved drugs for the treatment of MDS.

Segment 4 – Anemia in MDS: Survival, QoL, & Treatment Options Segment 4 is an overview of supportive care with a focus on RBC transfusions and its effect on the morbidity and mortality of MDS patients. This segment also looks at the quality of life issues from the perspectives of the physical, functional, emotional, social and cost impacts on the patient with MDS.

Segment 5 – Azacitidine in MDS Segment 5 looks at the mechanism of action of the MDS treatment, azacitidine and patient selection criteria for use. The labeled and licensed indications as well as associated risks of azacitidine are reviewed.

Segment 6 – Lenalidomide in MDS Segment 6 looks at the mechanism of action of the MDS treatment, lenalidomide and patient selection criteria for use. An overview of the labeled and licensed indications as well as associated risks is reviewed.

This multi-segment program will allow participants to choose the segments that interest them and to learn at their own pace. Segments may be completed via a written program, online in our technologically advanced MDS Foundation Educational Center, or via CD-ROM on their personal computer. This multi-segment program is available in the following languages: English, French, German, Italian, Japanese and Spanish. The program is approved for 1 hour of CME credit upon completion. There is no charge for this educational activity. The Myelodysplastic Syndromes Foundation strives to serve as an effective conduit for information regarding the most updated treatment options, clinical studies, referrals to Centers of Excellence, and other information concerning MDS. Please bookmark our site, www.mds-foundation.org, and check back frequently for new, informative programs.

43 Help the Foundation and Buy Your MDS Textbooks From Us!

Myelodysplastic lungs; the response of an organ to a variety (MDS)— identifying effective therapeutic Syndromes: of etiologic insults like aging, toxic exposure, regimens, adverse environmental and Clinical and Biological infections and auto-immunity. Among genetic factors, and efficient modalities of Advances infectious causes alone, pneumonia could supportive care that improve patient survival Peter L. Greenberg, MD be the result of a variety of possible and enhance quality of life. Stanford University pathogens including bacterial, viral, Medical Center tuberculous or fungal agents. Similarly, MDS Myeloproliferative Hardback, Nov. 2005/320 pp., illus. cannot be treated as a single disease. Disorders: Biology ISBN: 0521496683/$125.00** Attempts to harness the inherent complexity and Management Cambridge University press of MDS by devising “classifications” which Edited by: group the various syndromes as one disease Richard T. Silver, MD; As the current major comprehensive is as misguided as saying that a pneumonia Ayalew Tefferi, MD reference on all aspects of the clinical is not infectious because it did not respond classification underlying pathogenetic mech- October 2007/240 pp., illus. to antibiotics. Progress in the field will occur anisms and treatment of the myelodysplastic ISBN: 9781420061628/$161.96** faster when we re-analyze this premise. syndromes, Myelodysplastic Syndromes CRC Press: 800-272-7737 Therefore, until a clearer picture of the stands out as the definitive text on the disease emerges it is best to treat each of Myeloproliferative disorders, written by genetics, pathophysiology, and clinical the MDS syndromes as a separate entity. international renowned experts in the field, management of this wide range of syndromes. Having no classification is better than a examines: Authored by international experts, this book misleading one. This book is our attempt to – New and developing diagnostic protocols provides a state-of-the-art update of the and algorithms and supportive care current status and recent advances in the define the most crucial questions related to regimens field. The chapters cover all aspects of the MDS that need to be addressed immediately myelodysplastic syndromes, from an in-depth through logic, analysis and rigorous – The evolution and classification of recent analysis of the multifactorial nature of this experimentation. If the emerging problems myeloproliferative disorders disease, including a careful assessment of appear daunting, then instead of being – Advancements and the implications stromal, immunological and stem cell overwhelmed by them, we should follow the arising from clinical care and practice abnormalities, to a review of recent molecular advice of the great 20th century thinker – The activating JAK2V617F developed in a and cytogenetic discoveries and insights. Antonio Gramsci, “pessimism of the intellect chapter by top experts This book will be a valuable resource to must be faced with the optimism of will.” – The overlap between myeloproliferative clinicians and researchers who wish to learn disorders and myelodysplastic syndromes more about myelodysplastic syndromes. Myelodysplastic – The importance of histopathology and cyto- Syndromes, genetics on understanding these diseases Myelodysplastic Second Edition: Syndromes & Secondary Pathobiology and With the recent discovery of JAK2 Acute Myelogenous Clinical Management mutations in myeloproliferative disorders, Leukemia: Directions (Basic and Clinical medical science has taken a revolutionary for the New Millennium Oncology) stride forward toward understanding the pathogenesis of these diseases. This new (Cancer Treatment Edited by: advancement translates not only to a more and Research) David P. Steensma, MD rapid and reliable diagnosis, but also Edited by: November 2008/536 pp., illus. allows groundbreaking research into the Azra Raza, MD; Suneel D. Mundle, PhD ISBN: 978-01420074390/$225.42** development of new therapeutics. Written June 2001/278 pp., illus. Informa HealthCare in an easy-to-follow text myeloproliferative ISBN: 0792373660/$198.00** This reference provides a comprehensive disorders gives the practicing clinician a Springer Science+Business Media, Inc. overview of the latest research detailing single source answer to classification, Myelodysplastic syndromes are to the the etiology, epidemiology, treatment, and diagnosis, management, and recent advances bone marrow what pneumonia is to the detection of myelodysplastic syndromes in this disorder.

44 100 Questions & Highlights of Latest Growth Factor: Answers About 1. Greenberg P et al. Treatment of myelo- Myelodysplastic Literature in MDS dysplastic syndromes patients with Syndromes erythropoietin with or without granulocyte By: Suneel D. Mundle, PhD colony-stimulating factor: results of a Jason Gotlib, MD, MS; Listed below are citations of some new prospective randomized phase III trial by Lenn Fechter, RN, BSN publications relevant to MDS (pathogenesis, the Eastern Cooperative Oncology Group December 2007/172 pp., illus. clinical characterization, management, etc.). (E1996). Blood. 2009;114:2393-2400. ISBN: 9780763753337/$19.95** To access the complete article log on to This phase III prospective randomized Jones and Bartlett Publishers: www.pubmed.gov. trial evaluated the efficacy and safety 800-832-0034; www.JBpub.com of EPO±G-CSF with supportive care DIAGNOSIS AND PROGNOSIS: (n=53) vs. supportive care alone (n=57) Whether you’re a newly diagnosed 1. Sperr WR et al. Comorbidity as prognostic for the treatment of low risk MDS. The patient, a survivor, or loved one of someone variable in MDS: comparative evaluation response rates in the two groups were suffering from MDS, this book offers help. of the HCT-CI and CCI in a core dataset of 36% vs. 9.6% respectively. With a The only text available to provide both 419 patients of the Austrian MDS study median follow up of 5.8 years, no the doctor’s and patient’s views, 100 group. Ann Oncol. 2009 July 15 [Epub difference was seen in the rates of overall Questions & Answers About Myelodysplastic ahead of print]. survival or leukemic transformation Syndromes, provides practical, authoritative This retrospective study of 419 patients between the two study arms. On the answers to 100 of the most common with de novo MDS in a multivariate EPO ± G-CSF treatment arm, increased questions asked. Written with commentary analysis demonstrated comorbidity as an survival was observed for erythroid from actual patients, this is an invaluable independent prognostic factor in low to responders vs. non-responders. resource for anyone struggling with the intermediate-1 categories. Demethylating Agents: medical, physical, and emotional turmoil of 2. Neukirchen J et al. Platelet counts and 1. Martin M et al. A phase II study of 5-day this disease. haemorrhagic diathesis in patients with intravenous azacitidine in patients with myelodysplastic syndromes. Eur J Haematol. myelodysplastic syndromes. Am J Hematol. **All prices are in US dollars. 2009 Jun 22 [Epub ahead of print]. 2009 Jun 24 [Epub ahead of print]. A Duesseldorf registry study demon- Patients with MDS were treated with 75 To order, call strates thrombocytopenia as a strong mg/m2/day azacitidine IV infusion for 5 predictor of short survival, with or without days every 28 days. Twenty two evaluable The MDS Foundation: hemorrhagic complications. patients showed median PFS-11.3 mo, 1-800-MDS-0839 OS-14.8 mo and a greater degree of gene TREATMENT: demethylation in responders. TERMS OF THE OFFER: General: 2. Steensma DP et al. Multicenter study All individual orders must be prepaid by 1. Frytak JR et al. Estimation of economic of decitabine administered daily for 5 days every 4 weeks to adults with check or money order or charged on Visa, costs associated with transfusion myelodysplastic syndromes: The alter- Mastercard, or AmEx). Canadian residents, dependence in adults with MDS. Curr native dosing for outpatient treatment please add 7% GST. Residents of CA and Med Res Opin. 2009;25(8):1941-1951. (ADOPT) trial. J Clin Oncol. 2009 Jun 15 NY, please add local sales tax. A study on MDS patients identified [Epub ahead of print]. Shipping and handling charges for North between May 2000 and September US FDA approved dosing of decitabine is America are $6.00 for the first book and 2003 from US longitudinal retrospective 15 mg/m2 IV every 8 hours for 3 days. $1.75 for each additional book. Outside claims database revealed association of transfusion dependence with an This study assessed a dose of 20 mg/m2 North America (only credit card orders IV daily for 5 days every 4 weeks in MDS accepted)—$9.00 for first book; $5.00 for incremental cost of $31,255 per patient per year. patients. Ninety-nine patients were each additional book. enrolled with ORR-32%, CR-17%. Among the patients showing improvement, 82% had a demonstrable response at the end of cycle 2.

45 Lenalidomide: Ten dose levels between 200–6000 mg (sMDS) vs those who subsequently 1. Dürr D et al. Lenalidomide in 5q minus of TLK199 tablets were given in divided transformed (tMDS) to acute myeloid myelodysplastic syndrome: how long is doses on days 1–7 of 21 day cycle leukemia (AML) within 14 months; (2) enough? Ann Hematol. 2009 Jun 24 (max 8 cycles) in a total of 45 low, between del(5q) and other MDS patients. [Epub ahead of print]. int-1, and int-2 MDS patients. No dose A 6-gene 'poor risk' signature was limiting toxicities were seen. The most defined which was associated with A case report shows hematologic and common AEs were non-hematological AML transformation and provided cytogenetic response to lenalidomide, and of grade 1 or 2 in nature. A total additive prognostic information for IPSS a cytogenetic relapse within a year of of 17 hematologic responses were Intermediate-1 patients. Over-expression cessation of lenalidomide, but no observed with 11 being at doses of genes generating ribosomal proteins hematologic relapse even after 26 months 4000–6000 mg/day. and for other signaling pathways (Myc, from discontinuation of lenalidomide. Wnt) was demonstrated in the tMDS 2. Kurtin SE and List AF. Durable long-term PATHOBIOLOGY: patients. These data provided molecular responses in patients with myelo- 1. Langemeijer SM et al. Acquired mutations criteria refining prognostic categor- dysplastic syndromes treated with in TET2 are common in myelodysplastic ization and associated biologic processes lenalidomide. Clin Lymphoma Myeloma. syndromes. Nat Genet. 2009;41(7): in MDS. 2009;9(3):E10-13. 838-842. We would like to thank Suneel Mundle, A long term follow up on six responders SNP array-based genomic profiling and a member of the MDS Foundation, for to lenalidomide is reported. Transfusion genomic sequencing of 102 MDS his assistance in monitoring these independence was noted to sustain over patients identified acquired deletions important peer-review publications 4.5 years with continued lenalidomide and, missense and nonsense mutations on MDS. treatment even in 3 of the four del 5q in TET2 gene in 26% of patients. The patients who had persistence of the TET2 mutations were seen in all bone cytogenetic abnormality. marrow lineages including in CD34+ Insurance and Drug Other Agents: cells suggesting its early onset in the disease evolution. Reimbursement 1. Raza A et al. Phase 1-2a multicenter dose-escalation study of ezatiostat 2. Delhommeau F et al. Mutation in TET2 in Resource Guide myeloid cancers. N Engl J Med. 2009; hydrochloride liposomes for injection We have assembled a listing of ® 360(22):2289-2301 (Telintra TLK199), a novel glutathione insurance and drug reimbursement analog prodrug in patients with myelo- TET2 mutation was studied by gene resources for MDS patients. It is dysplastic syndrome. J Hematol Oncol. sequencing in 320 patients. TET2 important to know that there is support 2009;2:20. mutations were seen in 19% MDS, 12% for those who cannot Five dose levels between 50–600 mg/ MPD, 24% AML, and 22% CMML. afford medicine or m2 IV dose on days 1–5 every 14 days 3. Sridhar K et al. Relationship of Differential other healthcare were assessed in fifty-four enrolled Gene Expression Profiles (GEPs) in costs. We hope this patients. The most common AE were CD34+ Myelodysplastic Syndrome new resource will grade 1 or 2 and primarily constitutional Marrow Cells to Disease Subtype and be beneficial in help- in nature. Trilineage responses were Progression. Blood. Oct 2, 2009 [Prepub- ing you with your the myelodysplastic syndromes foundation, inc. observed in 4/16 patients with trilineage lished online ahead of print]. medical needs. cytopenia. Among the other 38, Microarray analysis demonstrated 1175 This guide to assistance programs Hematologic Improvement was noted in genes significantly differentially expressed in the United States is available for nine patients. by MDS vs normal CD34+ marrow cells, download from the Foundation’s 2. Raza A et al. Phase 1 multicenter dose- requiring a minimum of 39 genes to website or can be ordered in booklet escalation study of ezatiostat separately classify these patients. Major form upon request. hydrochloride (TLK199 tablets), a novel GEP differences were demonstrated glutathione analog prodrug in patients between normal and MDS patients and with myelodysplastic syndrome. Blood. between several MDS subgroups: (1) 2009;113(26):6533-6540. those whose disease remained stable

46 MDS Foundation Publications

MDS Handbooks Now Available in Multiple Languages New from the ■ Understanding Myelodysplastic Syndromes: A Patient Handbook MDS Foundation...

■ A Caregivers Guide to MDS: What Can You Do to Help? ■ What Does My Bone Marrow Do? ■ Myelodysplastic Syndromes in Children: A Family Handbook ■ It Takes Time to Realize Your Goals ■ EZ Tracker ■ Portraits in MDS

In addition to English, the Handbook is available in the following languages: the myelodysplastic syndromes foundation, inc.

ARABIC CZECH DUTCH FRENCH GERMAN GREEK HEBREW HUNGARIAN ITALIAN

JAPANESE POLISH PORTUGUESE ROMANIAN RUSSIAN SPANISH SWEDISH TURKISH

■ Transfusion-Dependent Iron Overload and MDS: A Handbook for Patients

Patient Information & Educational Materials Available from the MDS Foundation

■ The MDS News ■ MDS Essentials: Foundation’s E-Newsletter ■ Patient Diary ■ Understanding Myelodysplastic Syndromes: A Patient Handbook ■ Transfusion-Dependent Iron Overload and MDS: A Handbook for Patients In addition to English, the Handbook is available in the following languages: ■ Insurance and Reimbursement Resources for MDS Patients ■ Planned Giving Program: ARABIC CZECH DUTCH FRENCH GERMAN GREEK HEBREW HUNGARIAN ITALIAN A Guide to Financial Planning

JAPANESE POLISH PORTUGUESE ROMANIAN RUSSIAN SPANISH SWEDISH TURKISH All of these materials are available free of charge from the Foundation.

47 Contributions to the MDS Foundation

Charitable Thank You! Giving During the Holiday Season Gifts to the Foundation John and Dianne Fidler Grand Prairie, TX If you wish to support the work of the The MDS Foundation relies entirely on Foundation in the battle against MDS, Ralph, DH, Sophie, William Carmichael gifts and membership fees to further its please remember us during the holidays UK work. We would like to acknowledge the and consider donating a year-end gift. generosity of the following individuals and CA Zeta Beta Master Chapter Every penny helps. All donations organizations that have recently provided (formerly Preceptor Zeta Beta) are tax-deductible. gifts to the Foundation: Stockton, CA The MDS Foundation is very grateful for Susan J. Ferber Werner R. Britsch, Cuyahoga, OH the heartfelt support of its donors. Our In memory of Dr. Jerome Ferber work as a non-profit organization depends New York, NY Peter and Michele Carlucci Stamford, CT on public funding, and we hope that you Denise Wells, Mercer Island, WA include us as one of the worthy charities Lauren M. Hollander, New York, NY Wayne R. Meling, Arlington Heights, IL that you support this year. We have Mr. and Mrs. James Hester, Jr. enclosed a pre-addressed contribution Paul M. Nemiroff, Gibsonia, PA Lilburn, GA envelope to make it easier. You will receive an MDS Foundation enamel lapel pin in Joseph Artuso, Berwyn, PA John A. Snyder, Novi, MI appreciation of your donation. Kevin J. Lawlor, Warrington, PA Ruth Lublin, Bryn Mawr, PA Thank you for your support. E. Lewis, UK Allison E. Clark P. Denton, Wirral, UK Elaine Fincannon, Montgomery, AL Wade Schaeffer, Lancaster, PA Kraman Iron Works, Inc. Lt. Col. Richard and Julita Christian N. Rodgers, UK New York, NY Alexandria, VA Jerry A. Theiler, Stockton, CA Robert Baxter S. and P. Gorman, UK Great Totham North, UK J. Denton, Wirral, UK R.A. Firth, Lytham St Annes, Lancs, UK Richard K. Meadows W.R. Fisher, UK Naples, FL E.C. Wyn Williams, UK Alice Flynn, Tinley Park, IL HSBC Golf Society Liverpool I. and J.R. Bolshaw, UK Elmer Rawls, Locust Grove, VA c/o Paul Moore, Liverpool, UK Alison Denton, Wirral, UK R.D. Raynor, H.R. Bebington Colin Cosh, Shepperton, UK Pamela Lempert, Knutsford, UK Wirral, UK C.W. and L. Jones, UK C. and D. Chamberlain, UK P. Fardoe, Wirral, UK Joseph A. and Carrie E. Walker Margaret T. Yamato, Honolulu, HI Colin N. Woolley, UK Sebring, FL Edith LeBlanc, Silver Springs, FL Fred Burchell, Rickmansworth, UK Melvin B. Ringel, Baltimore, MD Colin and Irene Orrett, Sunrise, FL Steven J. La Force, Princeton, NJ P. and E. Kinsella, UK Dave Paul, Winchester, Hampshire, UK David Hazeldine, Wirral, UK Jennifer Harris, UK Fernanda Smith, Plymouth, MN S. Jones, UK Oliver and Marlene Strampher Yuma, AZ Clara Gerhardt, Niota, IL William M. Pearson Hamilton, Ontario, Canada Harris Stavrakakis, Athens, Greece Dr. M. Marlene Godoy, Irvine, CA

48 In Memoriam

A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Mr. Bill Abbott Mr. Robert Russell Amato Mr. John S. Blanco Donations have been made in Mr. Abbott’s memory by: Donations have been made in Mr. Amato’s memory by: Donations have been made in Mr. Blanco’s memory by: Gail Hyman H. Ward and NGA Friends, Centreville, VA Perry and Daria Troina Diana Pino and East Hampton, NY Barbara Lindsey Palm Coast, FL April R. Bettendorf Celia Keenholtz Gainesville, FL A memorial fund has been established in the name of Franklin and Dorothy Covina, CA Dobbs Ferry, NY Barbara Arnold Mr. Jadranko Andrin Weydig Thomas and Bob and Sheila Abbott Melbourne, FL Donations have been made in Mr. Andrin’s memory by: Beach Haven, NJ Linda de la Reguera Bronx, NY Ronald Sockloff Bill Nelson & Christina Torrisi Cambria, NY Marina Vucenik, Little Neck, NY Reynette Coyne Wanaque, NJ Palm Coast, FL Frank and Lucy Polania Melbourne, FL Ted and Shirley Levy Lydia Nicolette Palm Coast, FL A memorial fund has been established in the name of Canandaigua, NY Palm Coast, FL Ralph and Florence Belotti Ed and Ellen Like Mr. Raul Baguer Dotow Island, SC Ramo and Isabelle Notar Palm Coast, FL Donations have been made in Mr. Baguer’s memory by: Olympia, WA Elena Smith A memorial fund has been established in the name of Phillip Standridge, Birmingham, AL Charles and Rita Modica Palm Coast, FL Mr. Frank R. Acquaire Palm Coast, FL Barbara Cox Donations have been made in Mr. Acquaire’s memory by: A memorial fund has been established in the name of Laguna Woods, CA The Burian Family William and Jennifer Smith Ms. Elizabeth Mary Barbieri A memorial fund has been established in the name of Woodbury, NY Wyckoff, NJ Donations have been made in Ms. Barbieri’s memory by: Mr. Leonard Bronheim Loretta Piscitello Laurie Vilim Dr. Marsha Plater Mr. and Mrs. Robert Melvin Waldwick, NJ Wyckoff, NJ Huntingtown, MD Hughesville, MD Donations have been made in Mr. Bronheim’s memory by: Marie T. Hennesey Dermot and Moon O’Brien Mr. & Mrs. Louis S. Buttice Carmila Pistorio Harold Bronheim, New York, NY Park Ridge, NJ Suffern, NY White Plains, MD LaPlata, MD Mark & Mary Jane Besanzo Rob and Laura Ernst A memorial fund has been established in the name of Park Ridge, NJ Mahwah, NJ A memorial fund has been established in the name of Mr. Peter Brooks Elias (Lou) Fahmie Peg and Kathy Krom Mr. Tito Bastianello Donations have been made in Mr. Brooks’ memory by: Oakland, NJ Bloomingburg, NY Donations have been made in Mr. Bastianello’s memory by: Brian and Susan Paradoski Point of Mara Resort John (Harry) Fahmie Robert and Marina Bastianello, Milan, Italy Bobcaygeon, Ontario & Trailer Park Otto, NC Angelina Sheerin Canada Brechin, Ontario North Caldwell, NJ Genevieve V. Ostanek A memorial fund has been established in the name of Alma F. Zogalo Canada Clifton, NJ Nicholas and Elizabeth Hart Mr. Seymour Baum Holland Landing, Ontario Kenneth and Phyllis Cyr Randolph, NJ Wayne and Karen Peterson Donations have been made in Mr. Baum’s memory by: Canada Barry’s Bay, Ontario Franklin Lakes, NJ Donna Sheerin Stan and Diane Lemon Canada Mindy Lipman, Jay and Sandy Poznanski, Howard Beach, NY Joseph De Cotiis West Caldwell, NJ Brechin, Ontario, Canada Joan Giroup Franklin Lakes, NJ RIHEA– Ramara & District Ontario, Canada A memorial fund has been established in the name of Robert and Tryna Adair Ramapo-Indian Hills Chamber Commerce Effort, PA Education Association Mr. Stanley M. Bennett, Jr. Brechin, Ontario, Canada Oakland, NJ The Franchino Family Donations have been made in Mr. Bennett’s memory by: Wayne, NJ Glen Vilim A memorial fund has been established in the name of Wyckoff, NJ Priscilla Koster Scott and Susan Carleton Pat Botsolas Ipswich, MA Rowley, MA Ms. Suzanne Brooks Oakland, NJ Christine Rover Wesley Chapell, FL Harold and Carol Schaffer Jack and Helen Grundstrom Donations have been made in Ms. Brooks’ memory by: Edwin J. Vilim Naples, FL Rowley, MA David and Janis Richards Jocelyn Ziemniak, Oreland, PA West Islip, NY Dr. & Mrs. Louis H. Gessay John H. and Havertown, PA Louis and Karen Spano La Jolla, CA Karen Grundstrom Michael & Christina Tillsley A memorial fund has been established in the name of Wyckoff, NJ Arlyne Sampson Rowley, MA Franklin Lakes, NJ Alan and Sharyn Gallatin Peabody, MA Joseph and Jan Saunders Col. Robert Brust Wyckoff, NJ Roberta Haselkorn Thomas Flynn & M. Alicia Rice Rowley, MA Donations have been made in Col. Brust’s memory by: Franklin Lakes, NJ Ipswich, MA Bernice F. St. Clair Major General and Mrs. A memorial fund has been established in the name of Springfield, VA James and Dorothy Freeze A memorial fund has been established in the name of Annandale, VA Mr. Harold Adams Helen R. Vaught Mrs. Bunny Pringle Benzinger Homosassa, FL Donations have been made in Mr. Adams’ memory by: Donations have been made in Mrs. Benzinger’s memory by: Shirley Adams Mary W. Pomeroy John and Mary Eichler A memorial fund has been established in the name of Thetford Center, VT Rio Verde, AZ Rio Verde, AZ Mr. Walter Buczynski A memorial fund has been established in the name of Richard and Bob and Edith Malone Donations have been made in Mr. Buczynski’s memory by: Marienne Larson Rio Verde, AZ Mr. Alvin Alkonis Ida M. Miller Steve Smotrich Rio Verde, AZ Ilo Meckel Donations have been made in Mr. Alkonis’ memory by: Fullerton, CA Stockton, NJ Tom and Bonnie Todd Hays, KS Joseph and Linda Kertesz Alfred Alkonis and Douglas and Rio Verde, AZ D. Keith and Dorothy Millett Milford, NJ Doris R. Rogalski Jo Ann Redding Ted and Mary Jo Patterson Rio Verde, AZ Marblehead, MA Marblehead, MA Rio Verde, AZ Ronald and Marilyn Davis A memorial fund has been established in the name of Christine B. Zahn Gerry #5 V.F.A., Inc. Dave and Marilyn Ritchie Russell, KS Mr. Aubrey Leon Byrd Concord, NH Marblehead, MA Rio Verde, AZ John and Bernice Mock Donations have been made in Mr. Byrd’s memory by: Robert Torrey, Jackie Jackson T.M. and Beverly Allison Boulder, CO Marblehead, MA Rio Verde, AZ Friends of Nancy, Staunton, VA

49 A memorial fund has been established in the name of A memorial fund has been established in the name of Karen L. Breivold Mr. & Mrs. Charles Patterson Mr. Clem Cahall Mr. Harvey Cummins Fargo, ND APO, AE Donations have been made in Mr. Cahall’s memory by: Donations have been made in Mr. Cummins’ memory by: Marie Denton Sarah Gibilisco Graham, WA Graham, WA David Biggs Tom Hendrie Joanne Wagonheim, Baltimore, MD Helga Hendrickson Wolfgang Arend, APO, AE Portland, OR Wilsonville, OR Green Valley, AZ A memorial fund has been established in the name of Heike Brow, APO, AE Eleonore L. Cahall Carollyn Farrar Mr. and Mrs. Todd Shasky Lake Oswego, OR Portland, OR Mr. Stanley W. Curtis Spark and Denice Jacot Frazee, MN Puyallup, WA Keith Barrow Deanna Ricci Donations have been made in Mr. Curtis’ memory by: Kala Kernott Aurora, OR Portland, OR Robert and Myra Meeker Bob Seymour Mary H. Horn Puyallup, WA Tacoma, WA Snyder & Foster CPA’s PC Sabrina Lindquist Long Beach, CA Carmel, CA Mr. and Mrs. Gene Blum Portland, OR Happy Valley, OR Edwin and Rosanne Thrapp Graham, WA Graham, WA Lisa Preble Northwest Natural Gas Co. A memorial fund has been established in the name of Shirley Fichtner Gladstone, OR Portland, OR Alma Clements Mr. Nicholas D’Angelo Minneapolis, MN Detroit Lakes, MN Barry Raber Anita White Donations have been made in Mr. D’Angelo’s memory by: Ruth DeFrance Portland, OR Sherwood, OR Benjamin & Virginia Snyder Bemidji, MN Sun City West, AZ John Lancaster Amanda Briles Maryann Belardo Neil and Susan Bencivengo Hamilton, NJ Hamilton, NJ Carol Bengelsdorf Kathy Illg, Frazee, MN Tigard, OR Portland, OR Tacoma, WA Heather Campbell Bruce A. Kaiser The Wokoun Family EOTNCC James & Phyllis Van Sickle Hamilton, NJ Hamilton, NJ Mr. and Mrs. Jim Shasky Stevensville, MT Gladstone, OR Tigard, OR Moorhead, MN Jack Rust Robert Bell John and Mary Ann D’Oria Yvonne Roman Cook Fairfax, VA Tigard, OR Yardville, NJ New Hope, PA A memorial fund has been established in the name of Northwood Business Services Peg Pfab Edmund and Norma Smith Edward & Cynthia Thomas Mr. Don Dodson Hamilton, NJ Yardville, NJ Portland, OR Aloha, OR Donations have been made in Mr. Dodson’s memory by: Frederick Hirsch Paul Halvorson Yardville Supply Co. Joan Enright Portland, OR Portland, OR Hamilton, NJ Robbinsville, NJ M. Donald and Patricia Nagai, Covina, CA Carl W. Foster CPA LLC Carol Ann Sloan Betty J. Probola Jennifer Merkin Portland, OR Vancouver, WA Trenton, NJ Pipersville, PA A memorial fund has been established in the name of Catherine Speake Ginna Raahauge John & Lorraine Rasimowicz Gary and Beverly Gessner Mr. Daniel P. Doyle, Sr. Seattle, WA Gilroy, CA Hamilton Square, NJ Yardville, NJ Donations have been made in Mr. Doyle’s memory by: Jan Moran, Portland, OR Fred and Anne Di Giuseppe Al and Kathleen Schuster Hamilton Square, NJ New Hope, PA Stewart Weingord Lisa Ann K. Licari Glen Cove, NY Nanuet, NY A memorial fund has been established in the name of Russell E. Lambert Timothy and Susan Bishop Lambertville, NJ Mercerville, NJ Carol Day Smile Spa of N. Jersey, L.L.C. Mr. Lawrence E. Chamberlain West Milford, NJ Midland Park, NJ Donations have been made in Mr. Chamberlain’s memory by: A memorial fund has been established in the name of Daniel Mullins Dan and Karen Grady White Marsh Psychiatric Associates LLC, Baltimore, MD Ms. Barbara Davis Walden, NY Glen Rock, NJ Richard & Barbara Ziegner Ed and Kathy Kahn Donations have been made in Ms. Davis’ memory by: A memorial fund has been established in the name of West Milford, NJ Tucson, AZ Rymer and Rita Maxwell Lisa Cilli-Smith Mr. Everett Chaney Fred and Pat Hodde Terry & Margaret Bradshaw Louisville, KY Columbus, OH West Milford, NJ Central Valley, NY Donations have been made in Mr. Chaney’s memory by: Jay and Linda Fullenkamp Tim and Tina Woods J. Blanco Associates, Inc. Bliss Siman Eileen H. Miller, Lindsey, OH Sunman, IN Scottsdale, AZ Oakland, NJ New York, NY Wayne and Cheri Presley Randy and Ero Rifelli Rita Modugno A memorial fund has been established in the name of Marcia Spattman Richmond, KY Mount Vernon, NY Ridgewood, NJ Mr. Evan Cherkasky Tallahassee, FL Rachel Davis Riddell Greg Riolo Burgess Steel Erectors Sally Davis Louisville, KY Donations have been made in Mr. Cherkasky’s memory by: White Plains, NY of NY Tallahassee, FL Gary Grill Englewood, NJ Ted and Shirley Levy, Naples, FL Ashland Inc. Law Dept Cincinnati, OH Columbus, OH Christy Carter A memorial fund has been established in the name of A memorial fund has been established in the name of Matthew Patterson Lexington, KY Mr. Robert Drach Dr. Paul Cherkasky Dublin, OH Megan Engle Donations have been made in Mr Drach’s memory by: Donations have been made in Dr. Cherkasky’s memory by: Carol Steele for Jenn Geldhof Mr. and Mrs. Bob Doone Mal Zampino Columbus, OH Lexington, KY Adam and Mercy Klein, Houston, TX Westerville, OH Hammond, IN Matthew McWhorter Allison Raine Clark Betty Skurka and Daughters Mr. and Mrs. Steve Fusak A memorial fund has been established in the name of Columbus, OH Lexington, K Munster, IN Whiting, IN Ms. Mildred Chester Penny Bachmann Jaffe Mr. and Mrs. Ted Blahunka Andy and Barbara Simpson Powell, OH Donations have been made in Ms. Chester’s memory by: Highland, IN Crown Point, IN A memorial fund has been established in the name of Mr. and Mrs. Bob Figler Mr. & Mrs. Al and Louise Siegel, Port Washington, NY Crown Point, IN Mary Blahunka Mrs. Florence Dines Highland, IN A memorial fund has been established in the name of Mr. and Mrs. Ed Seehausen Donations have been made in Mrs. Dines’ memory by: Dyer, IN Mr. and Mrs. Bill O’Brien Mr. Bill Cox Eunice Van Natta Bob and Virginia Loving Dan Mis Munster, IN Donations have been made in Mr. Cox’s memory by: Tacoma, WA Seattle, WA East Chicago, IN Elizabeth A. Drach Danis Kurdi Mindy Nyberg Bill and Carol Markley George & Deanna Haskins Mr. and Mrs. Val Mis Crown Point, IN St. Laurent, Quebec,Canada Beaverton, OR Lakewood, WA Tacoma, WA East Chicago, IN Fuji Coplan Corporation Ardella Douglas Lester and Shirley Greer Mr. and Mrs. Ed Bogucki Winnsboro, SC Graham, WA Bellingham, WA Munster, IN

50 A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Mrs. Julianna “Julie” O. Edel Mr. Al I. Fineman Mr. James Gleason Donations have been made in Mrs. Edel’s memory by: Donations have been made in Mr. Fineman’s memory by: Donations have been made in Mr. Gleason’s memory by: Ronald and Erica Clark Barney and Jayne Parker Geraldine G. Fineman Angelo and Rose Staikos Tallahassee, FL Crawfordville, FL Boca Raton, FL Hazlet, NJ St. Marks Wildlife Refuge Craig and Gayla Kittendorf Fort Myers, FL Woodville, FL A memorial fund has been established in the name of A memorial fund has been established in the name of W.C. and Dorothy Simpson Ms. Theresa Frendt Mrs. Winifred R. Gleason Eufaula, AL Donations have been made in Ms. Frendt’s memory by: Donations have been made in Mrs. Gleason’s memory by: A memorial fund has been established in the name of Lynn Shotwell Angelo and Rose Staikos Mr. William F. Elwell Arlington, VA Hazlet, NJ Donations have been made in Mr. Elwell’s memory by: A memorial fund has been established in the name of A memorial fund has been established in the name of Rosalie Elwell Charles & Pamela Owings Mr. Herbert Frey Ms. Rhoda Goldstein Warrensburg, MO Centerview, MO Donations have been made in Mr. Frey’s memory by: Donations have been made in Ms. Goldstein’s memory by: Jerry and Betty Lou Engen Stephen and Cathy Abney Warrensburg, MO Warrensburg, MO John Frey Robert, Sara, Jessica Frey Ted and Shirley Levy Allentown, PA Pittsburgh, PA Canandaigua, NY Floyd and Ganna Walker Garrett R. Crouch, II Warrensburg, MO Warrensburg, MO A memorial fund has been established in the name of A memorial fund has been established in the name of Cathy Jones Dorothy M. Dixon Warrensburg, MO Warrensburg, MO Mr. Sam Friedman Ms. Janet Gunin William & Alma Thompson William and Ann Elwell Donations have been made in Mr. Friedman’s memory by: Donations have been made in Ms. Gunin’s memory by: Warrensburg, MO Warrensburg, MO William Mark Friedman, Litchfield, CT Joan H. Gunin, Plano, TX Alan Kilbarger and Daric E. Elwell Julia Stumpff Warrensburg, MO A memorial fund has been established in the name of A memorial fund has been established in the name of Columbus, IN Kiwanis Club of Mrs. Louise Geerts Mr. Robert Healy Glenn and Leslie Petrie Warrensburg Donations have been made in Mrs. Geerts’ memory by: Donations have been made in Mr. Healy’s memory by: Warrensburg, MO Warrensburg, MO M.L. and C.A. Simon Sue R. Crouch Richard Carlson Roger and Marie Hueske Janet A. Jokela John and Kay Collins Warrensburg, MO Warrensburg, MO Spring, TX Bayou Vista, TX Champaign, IL Park Ridge, IL Bill and Lynn Teague Cindy Kilborn Daniel J. Ivers Suzanne Ditsler & A memorial fund has been established in the name of Nacogdoches, TX Harris County Public Health Mundelein, IL Friends of Family Mr. Clyde Ewing, Jr. Vic Geerts & Environmental Services Robert W. Kirby, MD Winnetka, IL Houston, TX Donations have been made in Mr. Ewing’s memory by: Boyou, TX Champaign, IL Theresa C. Healy Trevor & Katherine Linhart Lynda Sharp Robert Scully Mt. Prospect, IL Don and Georgia Edwards Jeanenne Zuba Richmond, TX Houston, TX Champaign, IL Tanya S. Jackson Sun City West, AZ Port Washington, WI Elaine Bordieri Jim Wesche, NARPI James and Mary Schaefer Urbana, IL Jeff and Judy Parsons Robert and Mary Noble Curves – Medical Center Williamsburg, KY Park Ridge, IL Zachera Wier Seattle, WA Big Lake, WI Houston, TX Grace Givens Eileen M. Elenz Gibson City, IL Rosanne Larson Marianne F. Kubousek Marisol Navaro Houston, TX Niles, IL Kathie E. Buttitta Kirkland, WA New Berlin, WI Austin, TX Don and Sandra Jones Carle Clinic Champaign, IL Donald and Loris Ewing Linda Bischoff-Magoto Lubbock, TX Urbana, IL Internal Medicine Residents Renton, WA Houston, TX Mike and Deanna Erskine Daniel and Karin O’Connor University of Illinois A memorial fund has been established in the name of Alan Baum Sugar Land, TX Plainfield, IL at Urbana-Champaign Urbana, IL Dr. Mohammed Abul Fazal Houston, TX M. Sylvia Edwards Jim and Ellen Jones Debbie Dorris Austin, TX Chicago, IL Lori A. Osterbur Donations have been made in Dr. Fazal’s memory by: Thomasboro, IL Friendswood, TX Michael Leibham Jim and Michelle Langdon Manjur Kalimullah & Family The Suffolk Medical Society Lyn Widlaski Houston, TX Toulon, IL Copiague, NY Islandia, NY Houston, TX William Hanson San Antonio, TX A memorial fund has been established in the name of A memorial fund has been established in the name of Rhonda White Tomball, TX Beth & Shannon McDonald Mr. Harvey Herskovitz Mr. William J. Feely Karen Kasner Brentwood, TN Donations have been made in Mr. Herskovitz’ memory by: Donations have been made in Mr. Feely’s memory by: Hillsboro, TX Dr. Thomas Kimbrough Galveston, TX Joanne Adleberg Sandra Eichacker, Arvada, CO Baltimore, MD

A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Mr. James Henry Ferrell Mr. George S. Geikie Mr. William L. Hewitt Donations have been made in Mr Ferrell’s memory by: Donations have been made in Mr. Geikie’s memory by: Donations have been made in Mr. Hewitt’s memory by: Joe and Connie Shay Anthony Ingeneri Athol Congregational Church Thomas and Judith Vanbuskirk Southborough, MA Milford, NH Athol, MA Fairport, NY

A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Mr. Louis Ferri Mr. Nicholas C. Georgatsos Mr. Roy H. Hilton Donations have been made in Mr. Ferri’s memory by: Donations have been made in Mr. Georgatsos’ memory by: Donations have been made in Mr. Hilton’s memory by: John and Marcy Skalsky Michael and Jean Baker Louis and Rene Kozloff Darryl H. Hilton Parma, OH Brunswick, OH Rockville, MD College Park, GA

51 A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Ms. Portia Hsiung Ms. Gloria Krouse Ms. Lorretta Mameo Donations have been made in Ms. Hsiung’s memory by: Donations have been made in Ms. Krouse’s memory by: Donations have been made in Ms. Mameo’s memory by: Robert and Marjorie Lee, Old Westbury, NY Gregory Stephens Monmouth Convalescent Center Lapuent, CA Long Branch, NJ A memorial fund has been established in the name of Ms. Idella Jackson A memorial fund has been established in the name of A memorial fund has been established in the name of Donations have been made in Ms. Jackson’s memory by: Ms. Sarah Lebby Mr. Cecil E. McCollum, Sr. Donations have been made in Ms. Lebby’s memory by: David Anderson, Grove Hill, AL Donations have been made in Mr. McCollum’s memory by: Janet Wiener, Paul Prepstein, Bennie and Peggy Chavous Fred and Dorothy Jennings Renee and Jerry Green Augusta, GA Grovetown, GA A memorial fund has been established in the name of Boynton Beach, FL Mr. Allen Kaden Alice Warren Chapter No.483 CSRA Master Travelers Order of the Eastern Star Grovetown, GA Donations have been made in Mr. Kaden’s memory by: A memorial fund has been established in the name of Augusta, GA Hal and Carol Lents Stephen and Ellen Sacks Ed and Donna Mishlode Mr. Donald M. “Skip” LeMonnier, Jr. Spares and Pairs Augusta, GA Melville, NY West Chester, OH Donations have been made in Mr. LeMonnier’s memory by: Sunday School Class Herman and Joyce Lamb Jerry and Sally Pollack Jeremy and Amy Abramson Waynesboro, GA Augusta, GA Plainview, NY White Plains, NY Maria Amalia R. Dos Passos Richard O'Keefe Dale and Jane Brown Mendham, NJ Mendham, NJ Mr. and Mrs. Larry Ray Bob and Felice Gordon Hephzibak, GA Jesup, GA Dix Hills, NY Margaret Neill Jeanne Alvarez John and Amy Hardy Mendham, NJ Bridgewater, NJ Elsie W. Mobley Augusta, GA Snellville, GA A memorial fund has been established in the name of Don and Lucille Slack Charles and Noel Robinson Long Valley, NJ Convent Station, NJ Ms. Thelma Kelly A memorial fund has been established in the name of Catherine M. Zink Dean and Susan Chow Donations have been made in Ms. Kelly’s memory by: Bristol, CT Long Valley, NJ Mr. Alvin J. McCormick David and Audrey Ivey C. Donald & Frances Lechner Steven Hurlbut Donations have been made in Mr. McCormick’s memory by: Annapolis, MD Frederick, PA Kailua, HI Augusta Clayton Bill, Connie Tomlin & Family Charles and Andrea Boling Joseph and Lenore O’Hara East Tawas, MI Loveland, OH Ellicott City, MD Ocean City, MD A memorial fund has been established in the name of Robert and Diane Land Jay Flint, Frederick, PA Mrs. Carol Longo A memorial fund has been established in the name of Pottstown, PA Lola R. Dealy Donations have been made in Mrs. Longo’s memory by: Mr. Joseph Jack McCullough Wayne and Barbara Strohm Jacksonville, FL Craig and Mimi Quick Donations have been made in Mr. McCullough’s memory by: Pittsburgh, PA Dan and Amy Hooe Greenville, NC P. and Carol Howells Jacksonville, FL George M. "Scooter" Smith Wayne Mediamolle Frederick, PA Houston, TX Whitney National Bank Richard and Jean Hatfield A memorial fund has been established in the name of David and Anne Christ Frederick, PA Houston, TX Mr. Kenneth M. Lugar Frederick, PA Jeanne Wetherington Green Cove Springs, FL Donations have been made in Mr. Lugar’s memory by: A memorial fund has been established in the name of Paul Tabbert Lei and Rose Harsch Mr. Bill McLeod A memorial fund has been established in the name of Stewardson, IL Neoga, IL Donations have been made in Mr. McLeod’s memory by: Mr. Richard E. Kleinman Tom Bailey & Family Sam and Susan Buzzard Sullivan, IL Stewardson, IL Paul Wilner San Francisco Film Donations have been made in Mr. Kleinman’s memory by: Monterey, CA Critics Circle, Alameda, CA Louie & Charlotte Williams Ivan and Carolyn Crutcher Ed and Linda Levy Findlay, IL Tower Hill, IL Ocean, NJ Ronald D. McCoy John and Shary Yakey A memorial fund has been established in the name of Decatur, IL Stewardson, IL Mr. Karl Monahan, Jr. A memorial fund has been established in the name of Merle and Mary Mechling Donations have been made in Mr. Monahan’s memory by: Mr. Richard K. Kobza Shumway, IL Michael and Lisa O’Connell Jacqueline O’Connell Donations have been made in Mr. Kobza’s memory by: A memorial fund has been established in the name of Peabody, MA Marblehead, MA Joseph and Mary Rae Wolf Jeffrey and Cheryl Janda Omaha, NE Omaha, NE Mrs. Delores Mae Madison A memorial fund has been established in the name of William and Ann Allen Frank A. Godek Donations have been made in Mrs. Madison’s memory by: Mrs. Mary Ann Hooks Monroe Omaha, NE Omaha, NE George and Patricia Stanich Nicholas J. McNamara John and Pauline Malone Ronald and Joyce Meister Clive, IA West Des Moines, IA Donations have been made in Mrs. Monroe’s memory by: La Vista, NE La Vista, NE Roxanne Overton Shirley A. Conner Tamara M. Coker C.A. Bridges Ronald & Sandra Neneman Paul and Dorothy Engler Des Moines, IA Clive, IA Roswell, GA Berkeley Lake, GA Lavista, NE Omaha, NE Robert Turner Jonita Fisher Joe Albisu Carl and Elsa Schuon Colleen R. Lenners Alvin and Pauline McColley Waukee, IA West Des Moines, IA Roswell, GA Morton, IL Omaha, NE Omaha, NE Myrna R. Basart John Hackley James and Esther Riha Earl & Lucille Brauckmuller West Des Moines, IA Des Moines, IA A memorial fund has been established in the name of Omaha, NE Greenwood, NE Scott and Diana Hatfield Steven C. Madison Mr. Dean Moye Charles and Jeanne Ortman Timothy P. Engler West Des Moines, IA West Des Moines, IA Donations have been made in Mr. Moye’s memory by: Omaha, NE Papillion, NE Katherine Hartman James and Patricia Bacome TelecomPioneers Winterset, IA John and Roni DiGennaro Omaha, NE Heartland Council Broomall, PA Denver, CO

52 A memorial fund has been established in the name of Richard and Carolyn Hart Robert and Colene Bauer A memorial fund has been established in the name of Ms. Lavere C. Munn Benton, IL Annapolis, MD Ms. Helen Roselli Donations have been made in Ms. Munn’s memory by: Morgan Birgé & Associates Gerald and Donations have been made in Ms. Roselli’s memory by: Chicago, IL Virginia Waldron Gary Munn Gerald & Joan Mae Bayer Arlington Heights, IL L’Hermitage Condominium Whitehouse Labs Dalton, GA Northbrook, IL Association, Inc. Whitehouse, NJ Boynton Beach, FL A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Mr. Victor Nicholas Musmanno Mr. Donald l. Pilling Mr. Arthur Rosenfeld Donations have been made in Mr. Musmanno’s memory by: Donations have been made in Mr. Pilling’s memory by: Donations have been made in Mr. Rosenfeld’s memory by: Krissy Weigand, Bob Gordon, Tom Ignas, Harry Baker and Cheryl S. Navarro Barry and Gloria Cole, Wynnewood, PA Alexis Dean, North Wales, PA Sterling, VA A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Mr. Carlos M. Santiago Mrs. Arlene O’Donnell Mrs. Judith Ann Pratt Donations have been made in Mr. Santiago’s memory by: Donations have been made in Mrs. O’Donnell’s memory by: Donations have been made in Mrs. Pratt’s memory by: Whitehouse Labs Veronica Taylor James J. O’Donnell, III Anthony & Yvonne Belcastro Merran Kaye Whitehouse, NJ Crowning Jewels Ocean City, NJ Reno, NV Willowdale, Ontario, CAN Helen Giordano, RN Huntersville, NC Sylvia Garratt Huntersville, NC A memorial fund has been established in the name of North York, Ontario, CAN Mr. William O’Handley A memorial fund has been established in the name of Mr. Leonard Schatz Donations have been made in Mr. O’Handley’s memory by: A memorial fund has been established in the name of Donations have been made in Mr. Schatz’s memory by: Anthony & Patricia Casiano Peggy McGarry Mr. Thomas Reading Herb and Sue Isaac Peter and Wendy Wright Staten Island, NY Staten Island, NY Donations have been made in Mr. Reading’s memory by: Southbury, CT Greenwich, CT R. J. Harley Annette Slawny Edward Schwartz and Keith and Liz Fleischman A memorial fund has been established in the name of and K. A. Reading Elm Grove, WI Jeanette Vancura Riverside, CT Mr. Gerard Olijslager West Allis, WI Robert Schwarz Boynton Beach, FL Donations have been made in Mr. Olijslager’s memory by: Milwaukee Broadcaster and Agnes Perez-Pena Club, Don Metzger & Bay View, WI A memorial fund has been established in the name of Diederik Olijslager Friends Montville, NJ John Archibald Mr. Fred Schmalz-Riedt Mequon, WI and Helen Mueller Donations have been made in Mr. Schmalz-Riedt’s memory by: Don Metzger & Friends, Milwaukee, WI Sharon Pinter Joan Vennemeyer A memorial fund has been established in the name of DBA DM Productions Jeffrey & Pamela Missiaen Pleasant Hill, CA Mill Valley, CA Mr. Harvey Pearlman Mequon, WI West Allis, WI Janet Hafenfeld Carter and Linda Corbitt Donations have been made in Mr. Pearlman’s memory by: Barbara A. Garnier Robert & M. Sarajane Loechne Franklin, WI Albuquerque, New Mexico Danville, CA Kenneth and Cynthia Eckstein Milwaukee, WI L. G. Laehn Jerry and Cathy Strauss Ellen San Souci Diamond Bridgewater, CT Patrick and Joan Feely Richmond, VA Walnut Creek, CA West Berlin, WI Brookfield, WI Peter and Judith Reiske Norman Estep, Earlysville, VA A memorial fund has been established in the name of John and Millie Andorfer Milwaukee, WI Delafield, WI Mr. Donald W. Peterson A memorial fund has been established in the name of Donations have been made in Mr. Peterson’s memory by: Ms. Jeannine Schwartz A memorial fund has been established in the name of Donations have been made in Ms. Schwartz’ memory by: Vincent and Nancy Roberts Barbara Mayes Chicago, IL Jerry and Katie Sanborn Mr. Richard P. Rebetti Al and Joyce Hagedorn Friends @ Raymond & Sylvia Emerick Chandler, AZ Donations have been made in Mr. Rebetti’s memory by: Fentress, TX Child Support Division Austin, TX Park Ridge, IL Tom and Fran Durkin Mr. and Mrs. Schick, Mr. and Mrs. Robert Nebel Jesse and Renne La Rosa Arlene Bickler Chicago, IL Mr. and Mrs. Moller and Staten Island, NY Lubbock, TX Ruby Martinez Austin, TX Park Ridge, IL George and Vera Hendricks Mr. and Mrs. Rebetti Geralyn Starrantino William and Mary Lou Kelly Howard F. Benjamin Hoffman Estates, IL Farmingo, NY Oyster Bay Cove, NY Waverly, IA Carol Cook Glencoe, IL Richard Strauss Terry and Jill Frisbie Austin, TX Scott and Debra Rolfs Elk Grove Village, IL Seguin, TX Robert Hernandez A memorial fund has been established in the name of Mequon, WI Jeremy Snarski Nettie Mertz Austin, TX Victor and Jean Bittner Hoffman Estates, IL Mr. John J. Reynolds Hallettsville, TX Hinsdale, IL Sidney H. Holab Donations have been made in Mr. Reynold’s memory by: Glenview, IL A memorial fund has been established in the name of Marianna Bogdanowicz Anthony and Harry and Sharon Cohen Chicago, IL Lorraine M. Esterquest Lisa Robin Morales Yonkers, NY Ms. Jeanette Scibelli Des Plaines, IL Mary Ann Lupa and Patchogue, NY Audrey Dreier-Morrison Donations have been made in Ms. Scibelli’s memory by: John W. Lowell Ron and Marge Auer Cicero, NY Richard Scibelli Jonelle Scibelli Chicago, IL Park Ridge, IL Manalapan, NJ Hoboken, NJ Patricia A. Dohr Ken Hendricks A memorial fund has been established in the name of Park Ridge, IL San Luis Obispo, CA Mr. Paul Robin A memorial fund has been established in the name of George and Belinda Wang Beth E. Benjamin Mr. Richard Scott Park Ridge, IL Chicago, IL Donations have been made in Mr. Robin’s memory by: Donations have been made in Mr. Scott’s memory by: Beatrice V. O’Connell Roselyn Hull Stanley and Helenan Robin Chicago, IL Rolling Meadows, IL Kalamazoo, MI Park National Bank Human Resources, Newark, OH

53 A memorial fund has been established in the name of A memorial fund has been established in the name of Richard, Kathryn and DeLeon Carter Foundation Ms. Kathleen Shaw Mrs. Marsha Tucker Scott Tyson Rocky Mount, NC Nashville, NC Donations have been made in Ms. Shaw’s memory by: Donations have been made in Mrs. Tucker’s memory by: S. Wyndham and Berry Anderson Huldah Anderson Robert Lindstrom Faye C. Livermore Coleen Bench Vince Potts and Tarboro, NC Richmond, VA Galesburg, IL Galesburg, IL Syracuse, NY Margaret M. Robinson Arnold and Rebecca Lakey L.S. and Mary Wright Natalie Shaw, Peoria, IL Deborah Taylor Nedrow, NY North Wilkesboro, NC Rocky Mount, NC Brunswick, GA Mr. & Mrs. Joe Brewer, III Howard S. Boney, Jr. A memorial fund has been established in the name of Rocky Mount, NC Tarboro, NC Mr. Daniel Sheehan A memorial fund has been established in the name of Mr. & Mrs. Joe Brewer, Jr. Sam and Vel Johnson Donations have been made in Mr. Sheehan’s memory by: Mrs. Bettie Jane Munden Tulloss Charlotte, NC Rocky Mount, NC Randolph Bishop, Flushing, NY Donations have been made in Mrs. Tulloss’ memory by: John and Carol Alexander H. Duane Tolan Winnetka, IL Rocky Mount, NC John and Anne Griffin Phyllis Hardin A memorial fund has been established in the name of Hilton Head Island, SC Asheboro, NC Mr. & Mrs. John Smith, Jr. Bruce and Susan Lea Columbia, SC Alpharetta, GA Mr. Jerome Shifter Larry W. McAdams Ben Mayo Boddie Donations have been made in Mr. Shifter’s memory by: Rocky Mount, NC Rocky Mount, NC R. Ward and Sue L. Sutton Marilyn W. Moore Rocky Mount, NC Rocky Mount, NC Richard and Marilyn Dickstein, Floral Park, NY Benjamin A. Parrott Nick B. Boddie Greenville, NC Rocky Mount, NC David C. and Edna B. Corn William and Maxine Hobbs Rocky Mount, NC Wilmington, NC A memorial fund has been established in the name of Randall and Nancy Stewart Libba H. Weaver Rocky Mount, NC Rocky Mount, NC Robert and Patricia Mauldin Ben and Sue Moore Mr. Ron Siebert Rocky Mount, SC Rocky Mount, NC Samuel M. Marsh Roger and Trudi Water Donations have been made in Mr. Siebert’s memory by: Rocky Mount, NC Rocky Mount, NC Phyllis S. Cowell Pat and Carol Patterson Rocky Mount, NC Rocky Mount, NC David Eddlemon Jerry and Vanessa Johnson James R. Dickens D. Steve White Kate Harrison Helen J. McPherson Grand Prairie, TX Grand Prairie, TX Rocky Mount, NC Wilson, NC Rocky Mount, NC Camden, NC The Euler Family, North Richland Hills, TX Robert Barnhill, Jr. Gary Phillips Joyce W. Parker Donald and Gaye Mucci Tarboro, NC Rocky Mount, NC A memorial fund has been established in the name of Rocky Mount, NC Rocky Mount, NC Dudley and Sheila Whitley Mike Hancock Cliff and Peggy Perry Richard and Christa Greene Mrs. Nancy Ellen Siegel Rocky Mount, NC Rocky Mount, NC Rocky Mount, NC Wake Forest, NC Donations have been made in Mrs. Siegel’s memory by: Dr. & Mrs. H. Clifford Baggett Munroe Best, Jr. Pattie M. Dunn Dr. & Mrs. Stuart Todd L. Simmons Bart, Ellie and Paul Meier Raleigh, NC Goldsboro, NC Rocky Mount, NC Rocky Mount, NC Freehold, NJ Tranquility, NJ Sam and Claire Parham Pinna, Johnston & Burwell, Bill and Brenda Eskridge Dillon and Katie Rose Tom and Kathy Fisher Ralph and Judy Shotwell Rocky Mount, NC P.A.,Attorneys At Law Rocky Mount, NC Rocky Mount, NC Raleigh, NC Aiken, SC Newton, NJ Johnny and Pat Wooten Jane Hines Jean Bishop Richard & Nancy Manning, Newton, NJ Rocky Mount, NC Julia Miles Brock Pine Knoll Shores, NC Rocky Mount, NC Virginia Beach, VA Gene and Nancy Lewis George and Gail Trunk G. Vincent Durham A memorial fund has been established in the name of Rocky Mount, NC Bucky and Deanie Overton New Bern, NC Rocky Mount, NC Rocky Mount, NC Mr. Robert Springer Don and Eileen Williams Mr. & Mrs. C.E. Foster Ken Lewis & the Donations have been made in Mr. Springer’s memory by: Rocky Mount, NC J. Steve & Penny Hoard III Rocky Mount, NC Staff of FirstCarolinaCare Tarboro, NC Frankie and James Tilley T.S. and Slyvia Jacocks Pinehurst, NC Pat Eiynck, Dennis Springer, Loosely Knit Golf Group Rocky Mount, NC Frances A. Gaither Eugene Springer Sagamore Hills, OH Nags Head, NC Carol H. Eatman Rocky Mount, NC Hastings, MN Clay T. Strickland Stan White Realty Rocky Mount, NC Spring Hope, NC Lee Cooper & Construction, Inc. Dr. & Mrs. Larry E. Price Tarboro, NC Nags Head, NC Wilson, NC A memorial fund has been established in the name of James, Kate, Mari Robin and Frances Tharin The Deleon Carter Foundation Dean and Jeanne Spangler Ms. Norma Spruch Rocky Mount, NC Rocky Mount, NC Rocky Mount, NC Donations have been made in Ms. Spruch’s memory by: W.R. and Betty McAuley Mr. & Mrs. A.P.Thorpe, III David, Susan Berck & Family Harry and Lee Berck Rocky Mount, NC Rocky Mount, NC A memorial fund has been established in the name of Nashville, TN Great Neck, NY Dr. & Mrs. Dan Crocker S. Wyndham and Mr. Richard Valicenti Rocky Mount, NC Huldah Anderson Donations have been made in Mr. Valicenti’s memory by: A memorial fund has been established in the name of Tim and Mary Sue Smith Richmond, VA Rocky Mount, NC Arthur and Irene Goodwin Jed and Peg Deegan Joan Valicenti Mrs. Gussie Stabins Brewster, MA Orleans, MA Donations have been made in Mrs. Stabins’ memory by: Simmons & Harris, Inc. Tarboro, NC Rocky Mount, NC Carlton and Gaynelle Taylor Ted and Shirley Levy, Canandaigua, NY Metro Maintenance, Inc. Rocky Mount, NC A memorial fund has been established in the name of Div. of Simmons & Harris, Inc. Helen H. Laughery Mr. Jay Van Grover A memorial fund has been established in the name of Rocky Mount, NC Rocky Mount, NC Donations have been made in Mr. Van Grover’s memory by: Mr. Loren A. Steiner H. Stan and Linda Ford Marion Barnes Millie Amsterdam and Caryl Hornstein Donations have been made in Mr. Steiner’s memory by: Rocky Mount, NC Rocky Mount, NC Stanley Goldgeder Bayside, NY Mary Steiner, Aurora, CO Kay & Lynda Mears Mowery Tim Valentine Great Neck, NY Cary, SC Nashville, NC C. Whyte Ellington Dr. & Mrs. Ted Strickland A memorial fund has been established in the name of A memorial fund has been established in the name of Raleigh, NC Rocky Mount, NC Mrs. Jeanette Toth Betsy Hine Blake W. Tharin Ms. Naomia Walters Donations have been made in Mrs. Toth’s memory by: Apex, NC Rocky Mount, NC Donations have been made in Ms. Walters’ memory by: Joe Toth Donna, Dave & Davy Bunton Vince and Genie Andracchio A.G. Ingram Mendel Elementary Staff Manalapan, NJ Arlington, VA Rocky Mount, NC Rocky Mount, NC Houston, TX

54 A memorial fund has been established in the name of Margie Quinn Chase & Chase Mr. Bradley B. Warren, CPA Philadelphia, PA Hackensack, NJ Donations have been made in Mr. Warren’s memory by: Dr. & Mrs. Paul Chase Martha C. Freibert A Living Endowment Cherry Hill, NJ Columbia, SC Don Walston, David Jones, John and Beth Narron Charny, Charny & Karpousis, P.A. Many families are affected by living Johnelle Piedlow, Eb Moore, Wendell, NC Mount Laurel, NJ with the reality of MDS. There is an Jan Bromfield, Philip Matthew, Kathy K. Burnette Jan Tomlinson, Howard Perry Oxford, NC A memorial fund has been established in the name of extraordinary way to contribute to the Raleigh, NC Alexander and Ida Leane Mr. Herbert Weiss MDS Foundation and support our Sarah Powers Warren Flax Raleigh, NC Potomac, MD Donations have been made in Mr. Weiss’ memory by: mission of working as a resource for Bill and Martha Dickson A. G. Inscoe, DDS Mr. & Mrs. Fred R. Jarratt Pepco Energy Services/ patients, families, and health-care Myrtle Beach, SC Spring Hope, NC Richmond, VA Construction Department professionals. Betsy Myrick Cammie Lowry Read Tony and Carol Luiz Arlington, VA Raleigh, NC Walkertown, NC Newington, CT John Fratangelo A commitment to donate to the Jonathan Allen Mabel D. Barbee Bill and Murie Marin Brookeville, MD Foundation on occasions of loss, Falls Church, VA Spring Hope, NC Delmar, NY birthdays, and anniversary remem- Florence C. Bunn Allen C. Barbee, II Spring Hope, NC Spring Hope, NC A memorial fund has been established in the name of brances can be made. Honor your Ms. Lillian Dinnberg Wetzstein friends or family members on these A memorial fund has been established in the name of Donations have been made in Ms. Wetzstein’s memory by: occasions with a donation, and the Mrs. Rosalind Wasserman Peggy Cherkasky, Pittsford, NY MDS Foundation will send an Donations have been made in Mrs. Wasserman’s memory by: acknowledgment to the recipient, Jonathan and Marlene Klein Barbara Stone A memorial fund has been established in the name of Commack, NY Lakeworth, FL Ms. Donna Wiese recognizing the occasion. Shelley Richie Leebow Donations have been made in Ms. Wiese’s memory by: Avenlura, FL A Living Endowment donation Jennifer Moser Chapter 25, NYC Housing New York, NY Authority Local 375, DC 37 has been made in honor of: A memorial fund has been established in the name of Jennifer Schneider New York, NY Sister of Mrs. Doris Schwartz Mr. Buddy Watts Flushing, NY Donations have been made in Mr. Watts’ memory by: Father of Dr. Phil Coudrai Myrna Pearlman, Longboat Key, FL A memorial fund has been established in the name of Mr. Alan Root Ms. Ethel S. Willcoxon (Graduation from Law School) A memorial fund has been established in the name of Donations have been made in Ms. Willcoxon’s memory by: Mr. Barry Weinberg Mamie Ferrell, Terry and Dian Thomson Jacob Gruber & Family Donations have been made in Mr. Weinberg’s memory by: Keedysville, MD (In Memory of Mother) Norma Weinberg & Family, Boynton Beach, FL Marilyn Steinback (Birthday) A memorial fund has been established in the name of Mr. David Wolff Robert Frutkin (Birthday) A memorial fund has been established in the name of Donations have been made in Mr. Wolff’s memory by: Mr. Sidney Weinberg Dr. & Mrs. Neil Schlackman Donations have been made in Mr. Weinberg’s memory by: Peplin, Inc. Dr. Aurora Seminara (Birthday) Emeryville, CA Brooklyn, NY Donald and Judith Love Barry, Gloria Cole & Family Dr. Aryeh Shander & Staff Dan Maiman These donations were submitted by: Cherry Hill, NJ Wynnewood, PA Englewood, NJ Port Washington, NY Scott and Alysa Bannett Larry & Charlotte Cardonick Geoff & Sandy Goldworm Cherry Hill, NJ Cherry Hill, NJ A memorial fund has been established in the name of Jupiter, FL Jim and Sue Lombardo Mark and Allyson Zinman Mrs. Lisa Post Zahler Broomall, PA Mt. Laurel, NJ Donations have been made in Mrs. Zahler’s memory by: Andrew & Nancy Freedman Paul Prepstein, A Living Endowment donation Philadelphia, PA Janet Weiner Charlie Green and Jose Carl and Caryl Derenfeld has been made in honor of: Mark and Pamela Blaskey Boynton Beach, FL San Francisco, CA Buffalo Grove, IL Philadelphia, PA William and Bertha Remer Deborah Miraglia Diane Zubko Ms. Sherri Koehntopp Philadelphia, PA Port Washington, NY Commack, NY Roderick Gagne This donation was submitted by: Philadelphia, PA James Barson, Joseph Susan Kantor Ruth Zipkin Barry M. Abelson D’Amore, Ginny Faugl, New York, NY Locust Valley, NY Betty Lou Lindholm, Shoreview, MN Philadelphia, PA Deborah Homa, Edward Nancy Kessler Bob and Joan Altman Kessel, Judy Knobler, Mount Kisco, NY Katonah, NY Hangley Aronchick Charlene Leis, Doreen Lys Alessi Meryl Wolf A Living Endowment donation Segal & Pudlin, Shanon McCusker, Lisa Petkin, Rockville Centre, NY Rivervale, NJ Levin and William Hangley Nadine O’Hara, Carole Troisi, has been made in honor of: Philadelphia, PA Philadelphia, PA Anne Green Your Friends at CNN Boynton Beach, FL New York, NY Joey Weinberg Anne B. Cook Irvin and Lois Cohen Philadelphia, PA Reading, PA Randolph and Marcy Todd Mary Caroddo Fort Washington, NY Long Beach, NY This donation was submitted by: Kay Whitty & Family Vincent and Linda Segal Margate, NJ Ocean City, NJ Millicent Amsterdam and Jacqueline Rose Hott Ferne Wagman, Boynton Beach, FL Karen J. Aloia Stanley Goldfeder Great Neck, NY Blue Bell, PA Great Neck, NY

55 MDS Foundation Information

The Foundation’s Board of Directors

John M. Bennett, MD Terry Hamblin, DM, FRCP, FRC Path the myelodysplastic syndromes foundation, inc. Professor of Medicine, Emeritus Professor of Immunohaematology Laboratory Medicine and Pathology Southampton University Membership University of Rochester Medical Center Bournemouth, United Kingdom Rochester, New York, U.S.A. Information Eva Hellström-Lindberg, MD, PhD The MDS Foundation would like to have David T. Bowen, MD Associate Professor of Hematology you as a member. Membership is US$40 a Consultant Haematologist Karolinska Institutet year for physicians and other professionals. The Leeds Teaching Hospitals Institution for Medicine Patients, their families, and others interested Leeds General Infirmary Huddinge University Hospital in MDS may join at the reduced rate of $25. Leeds, United Kingdom Stockholm, Sweden Membership benefits include quarterly issues of the MDS News, a special Mario Cazzola, MD Kathy Heptinstall, BSN, RN subscription rate of $119.00 for Leukemia Professor of Hematology Operating Director Research (a substantial discount from the University of Pavia The MDS Foundation, Inc. current institutional subscription rate of School of Medicine $2,373), and the worldwide Centers of Head, Department of Hematology Alan F. List, MD Excellence patient referral service. IRCCS Policlinico S. Matteo Professor of Medicine Pavia, Italy University of South Florida If you would like additional information, Executive Vice President please contact us at: Theo J.M. de Witte, MD, PhD Physician-in-Chief, Professor of Hematology and Morsani Chair The MDS Foundation University Medical Center Moffitt Cancer Center 36 Front Street Nijmegen St. Radboud Tampa, Florida, U.S.A. P.O. Box 353 Nijmegen, The Netherlands Crosswicks, NJ 08515 Ghulam J. Mufti, MD Phone: 800-MDS-0839 Elihu Estey, MD Professor of Haemato-Oncology Fax: 609-298-0590 University of London Professor, Division of Hematology Outside the US only: King’s College Hospital University of Washington 609-298-1035 Medical Center London, United Kingdom Member Fred Hutchinson Charlotte M. Niemeyer, MD Cancer Research Center Our Website Professor of Pediatrics Seattle Cancer Care Alliance The MDS Foundation website is for University Children’s Hospital Seattle, Washington, U.S.A. healthcare professionals, patients, and other Freiburg, Germany interested people. The Professional Forum Pierre Fenaux, MD and the Patient Forum are integral parts of Stephen D. Nimer, MD Professor of Hematology our website. Head, Division of Hematologic Oncology Hôpital Avicenne Memorial Sloan-Kettering Cancer Center The website is constantly being updated to University Paris 13 New York, New York, U.S.A. better serve the needs of our patients, their Bobigny, France families, and the physicians who treat them. Robert J. Weinberg, Esq. Peter L. Greenberg, MD Please visit us at: Pepper Hamilton LLP Professor of Medicine/Hematology www.mds-foundation.org. Philadelphia, Pennsylvania, U.S.A. Stanford University School of Medicine Stanford, California, U.S.A. Emeritus Member The MDS Foundation is a publicly Franz Schmalzl, MD supported organization, exempt from Innsbruck, Austria federal income tax under section 501 (c)(3) of the IRS code.

56 the myelodysplastic syndromes foundation, inc. Myelodysplastic Syndromes Practice and Treatment Survey Sponsored by the MDS Foundation, Inc.

THERE ARE 2 WAYS TO COMPLETE THIS SURVEY (IT SHOULD TAKE NO MORE THAN 10 MINUTES OF YOUR TIME): 1. Simply complete this form, detach and return it to the MDS Foundation via mail or fax. 2. Complete the survey online by logging on to our website at www.mds-foundation.org.

Overview and Objectives: The MDS Foundation recognizes that data on many aspects of MDS worldwide is sketchy or nonexistent. While individual investigators have developed databases to track MDS within their individual sites or working groups, that information is not located within one easily accessible database. The Foundation has attempted to design a survey that we hope will assist in describing some of the issues related to MDS worldwide as well as the treatments being utilized in this disease. While we know that this information is, in most instances, based on subjective criteria it can assist in identifying educational and research opportunities in the near term and until more accurate data is available. The results of this expanded survey will be shared with each of our Centers of Excellence and used by the Foundation to assess new educational and research opportunities. Thank you in advance for your consideration in completing this form.

01. Please indicate country in which you practice: ————————————————————————————————————————— Is your practice based at: ❐ An academic hospital ❐ A community-based hospital ❐ Private practice

02. How many MDS patients do you treat in your practice or institution each year? ❐ None ❐ 1 to 10 ❐ 11 to 25 ❐ 26 to 50 ❐ 51 to 100 ❐ More than 100

03. In the past five years did the number of patients you see for MDS increase, decrease, or remain the same? (Please check one.) ❐ Increased ❐ Decreased ❐ Remained the same

04. If the number of patients you see has increased please tell us why you feel this increase has occurred? (Please specify by typing or writing your response below.)

05. How often do you see each of your MDS patients? ❐ Monthly ❐ Every 3–6 months ❐ Annually ❐ Only with clinical indication of disease progression ❐ Never, they are referred

06. Do you tell your patients that MDS is a cancer? ❐ Yes ❐ No Why or why not? (Please specify by typing or writing your response below.)

07. When patients are referred to you how are they classified by the referring physician? (Please check all that apply.) ❐ Not categorized ❐ International Prognostic Scoring System (IPSS) ❐ French-American-British (FAB) ❐ World Health Organization (WHO) ❐ Other (If other, please specify by typing or writing your response below.)

57 08. How are patients classified in your practice or institution? (Please check all that apply.) ❐ Not categorized ❐ IPSS ❐ FAB ❐ WHO ❐ Other (If other, please specify by typing or writing your response below.)

09. If you do assign an IPSS or WPSS score, who at your institution assigns the cytogenetic score? ❐ Cytogeneticist ❐ Hematologist ❐ Other

10. Do you monitor your MDS patients with regular bone marrow standard cytogenetics? ❐ Yes ❐ No ❐ Only with clinical indication of disease progression

11. If your order cytogenetics and diagnostic BM cytogenetics produces no analyzable metaphase spreads, do you ❐ Repeat the test immediately ❐ Repeat the test at the next scheduled BM ❐ Order FISH for del(5q) only ❐ Order FISH for all or some of the common chromosome aberrations observed in MDS, namely, del(5q), del(7q), +8, MLL(11q23), del(20q) ❐ Do nothing ❐ Not applicable, I do not usually order cytogenetics

12. How often do you request BM standard cytogenetics for MDS patients? ❐ Only at disease presentation only to confirm/rule out a suspected MDS ❐ Every 3 months ❐ Every 6 months ❐ Annually ❐ Only with clinical indication of disease progression ❐ Never

13. How how often does the cytogenetics result impact on your management of patients with MDS? ❐ Always ❐ Sometimes ❐ Seldom ❐ Never

14. What would be a clinically reasonable turn-around-time for MDS cytogenetics? ❐ 3 days ❐ 7 days ❐ 14 days ❐ 21 days

15. What percentages of your MDS patients belong in the following IPSS risk categories? (Please enter the number before the %. Total should be 100%.) ______% Low ______% Intermediate-1 ______% Intermediate-2 ______% High ❐ Unknown

16. What percent of patients in each of these categories are transfusion-dependent? (Please enter the percentage in front of each category.) ______% Low ______% Intermediate-1 ______% Intermediate-2 ______% High ❐ Unknown

17. Do you monitor ferritin levels in your transfusion-dependent patients? ❐ Yes ❐ No 18. How do you determine when to begin chelation therapy in RBC transfusion-dependent patients? ❐ Increased ferritin levels: ❐ >1,000 ❐ >2,000 ❐ Other amount ❐ Number of transfusions: How many on average? ❐ Other criteria (Please specify by typing or writing your response below.)

19. What percentage of your transfusion-dependent patients are receiving chelation therapy? ______%

20. Has the availability of Deferasirox (Exjade®) increased the number of transfusion-dependent patients you place on chelation therapy? ❐ Yes ❐ No

58 21. Will you begin chelation therapy earlier? ❐ Yes ❐ No

22. What percent of the low- to intermediate 1-risk MDS patients you see are being:

______% Provided with supportive care only ______% Watched (with no intervention) ______% Actively treated

23. What percent of the intermediate 2- and high-risk MDS patients you see are being:

______% Provided with supportive care only ______% Watched (with no intervention) ______% Actively treated

24. How important are cytogenetic findings in treatment decisions for your MDS patients? ❐ Very important ❐ Somewhat important ❐ Important ❐ Not Important

25. If you answered that cytogenetic findings are important, which of the currently identified abnormalities most influence your decisions?

26. What types of supportive care are used in your center? (Please check all that apply.) ❐ Transfusions only (RBC, platelet) ❐ Growth factors (G/GM-CSF) ❐ Vitamins ❐ Antibiotics ❐ Other (If other, please specify type of supportive care by typing or writing below.)

27. Do you use EPO? ❐ Frequently ❐ Sometimes ❐ Seldom ❐ Never (skip to question 31)

28. How do you identify patients who may benefit from therapy with EPO?

29. In which diagnosis do you most often use EPO? ❐ RA ❐ RARS ❐ RAEB ❐ CMML

30. How do you decide that a patient is non-responsive to EPO? ❐ No response after 6 weeks of therapy ❐ No response after 12 weeks of therapy ❐ Patient remains transfusion-dependent ❐ Other (If other, please specify by typing or writing your response below.)

31. Do you use ATG? ❐ Frequently ❐ Sometimes ❐ Seldom ❐ Never (skip to question 34)

32. In which diagnosis do you most often use ATG? ❐ RA ❐ RARS ❐ RAEB ❐ CMML

33. What type of ATG do you use? ❐ Thymoglobulin® (rabbit ATG) ❐ Lymphoglobulin, Atgam® (horse ATG) ❐ Fresenius ATG ❐ Other (If other, please specify by typing or writing your response below.)

59 34. Based on the information available to you, which of the following drugs do you feel will be most useful in treating MDS in each risk category? (Please place a number on the line next to the treatment, with 1 being the most useful and 8 being not useful at all, and specify risk category.) RISK CATEGORY Low Intermediate 1 Intermediate 2 High

—— Arsenic trioxide (Trisenox®) ❐❐ ❐❐ —— Anti-thymocyte globulin (ATG) ❐❐ ❐❐ —— Cyclosporin ❐❐ ❐❐ —— Danazol ❐❐ ❐❐ —— Deferiprone ❐❐ ❐❐ —— Erythropoietin (Procrit ®, Aranesp®, Epogen®) ❐❐ ❐❐ —— Deferasirox (Exjade®) ❐❐ ❐❐ —— Desferoxamine (Desferal®) ❐❐ ❐❐ —— Azacytidine (Vidaza™) ❐❐ ❐❐ —— Lenalidomide (Revlimid™) ❐❐ ❐❐ —— Lonafarnib ❐❐ ❐❐ —— Decitabine (Dacogen™) ❐❐ ❐❐ —— Telintra™ ❐❐ ❐❐ —— Thalidomide (Thalidomid®) ❐❐ ❐❐ —— Valproic acid ❐❐ ❐❐ —— Zarnestra™ ❐❐ ❐❐ —— Other (If other, please specify by typing or writing your response below.)

35. In your opinion, what would be most helpful in increasing the referral of patients with possible or presumed MDS to a hematology practice? ❐ Education of primary care physicians, specialists in private practice or small hospitals, and medical students ❐ Patient awareness and education programs ❐ More clinical trials ❐ Improved dissemination of data from clinical trials ❐ More therapeutic options ❐ Other (If other, please specify by typing or writing your response below.)

36. Would you be interested in participating in new clinical studies? ❐ Yes ❐ No

37. Would you be interested in participating in a registry or additional surveys? ❐ Yes ❐ No

If you have answered yes to questions 36 or 37, please provide your contact information below:

Name:______

Address: ______

______

Phone:______Fax:______

E-mail:______

60