NEWS FROM

Support for People with S•P•O•H•N•C Oral and Head and Neck

VOL. 29 NO. 1 SUPPORT FOR PEOPLE WITH ORAL AND HEAD AND NECK CANCER, INC. SEPTEMBER 2019

remodel or destroy targets. In medicine, this has been extended to cutting and reshaping tissues (think LASIK eye surgery) or to destroy microbes and tumors. These latter effects have been S•P•O•H•N•C selectively enhanced with either simple exogenous dyes or more A PROGRAM OF SUPPORT sophisticated versions using nanoparticles or liposomes. This FOR technique is called Photodynamic Therapy and is gaining much PEOPLE WITH attention especially with . A third, less well-known ORAL AND form of therapy uses low dose light treatments to inhibit pain or inflammation as well as promote tissue healing and regeneration. HEAD AND NECK CANCER This treatment is called Photobiomodulation (PBM) therapy. Various terms have been previously used to describe this treatment such as cold lasers, low level light/laser therapy, photostimulation, among An Enlightening many others. Following intensive Summer Research Experience: searching I found that the Arany lab at University at Buffalo School Using Light Treatment of Dental Medicine (UB SDM) for Oral Cancer Care is leading some of this research with specific interest on tissue Jaeyoung Choi and regeneration and wound healing. Praveen Arany, BDS, MDS, MMSc, PhD Amongst numerous applications being explored in his lab was managing oral mucositis and dysgeusia with PBM therapy. Upon completing my first year at Dental School, I was looking at getting involved with dental research this summer to learn more An unfortunate sequelae in Oral Cancer Care: Oral Mucositis about progress in the field of clinical care delivery. Although Oral are one of the most prevalent cancer type with we had just started learning about the sophisticated biomaterials high mortality rates in the and worldwide. Current and biotechnologies revolutionizing clinical dentistry, I was treatments for oral or head and neck cancer patients include surgery, fascinated by the process of how these are developed and adopted chemotherapy and radiation therapy, either as stand alone or into clinical practice. Learning more about the rich history and combined approaches. While these treatments are directed at killing prestige of our school at the University of Buffalo, I discovered my rapidly dividing cancer cells, they unfortunately also damage or summer project was able to be destroy normal cells such as hair follicles, salivary glands, and chosen from many exciting areas lining mucosal cells in the mouth and gut. Consequently, a majority of research in every imaginable of patients undergoing oncotherapy experience pain and ulcers in field from stem cells, the oral the mouth called Oral Mucositis (OM). Depending on the course microbiome, biomaterials, oral and type of cancer treatments, its duration and severity can vary cancer and saliva. However, over days to weeks or months. one particular area caught my These side-effects can significantly affect quality of life in attention – using ‘light’ as a form those patients by causing agonizing oral and throat pain resulting of therapy. It first sounded like in reduced normal nutritional intake compounded by impaired science fiction. My cynicism sense of taste (dysgeusia), loss of appetite, oral dryness and was further promoted by a quick depression. Moreover, severe side effects can be so debilitating scan of the internet that showcased several anecdotal stories. so as to interfere with ongoing courses of cancer treatments often Nonetheless, my curiosity got the better of me and I set out to necessitating discontinuation or cessation that can affect treatment explore this scientific area more carefully. outcome. Current interventions for treatment-associated mucositis have been largely empirical with palliative mouthwashes, often The myths and magic of lasers including opioids. While these treatments provide temporary relief, From super hero cartoons to James Bond movies, laser beams they do not address the underlying causes of OM. There is clearly conjure up popular images of destruction and burning to selectively an urgent need for new approaches for OM management. LIGHT THERAPY continued on page 2 Make a Difference. Give a Gift Today. Page 2 September 2019

LIGHT THERAPY continued from page 1 A new paradigm: precise light activated pathways for therapy The use of PBM therapy has gained much attention in recent years for its ability to relieve pain or inflammation and promote wound healing and tissue regeneration in various clinical scenarios. PBM utilizes specific types of lasers or LEDs and even broad-band light Support for People with Oral and Head and Neck Cancer in the visible or near-infrared range spectrum at low doses. These wavelengths are in the non-ionizing range of the electromagnetic spectrum and do not produce tissue damage. PBM therapy generates therapeutic benefits in a non-thermal or heat producing non-surgical manner. Given the non-invasive and safe energy levels of light used for this treatment, there have been several comparisons drawn with BOARD OF DIRECTORS sunlight and photosynthesis in plants. Our current understanding Nancy E. Leupold, MA, Survivor, Founder & President Emeritus of the PBM therapeutic mechanisms can be categorized into James J. Sciubba, DMD, PhD, President three discrete areas of light-biological tissue interactions namely, Walter E. Boehmler, Treasurer Gail Fass, Secretary within the cell (intracellular), at the cell surface (cell membrane), Dorothy Gold, MSW, LCSW-C, OSW-C and outside the cell (extracellular). In the intracellular delivery Eugene N. Myers, MD, FACS, FRCS, Edin (Hon) pathway, light is applied and absorbed which results in disruption EXECUTIVE DIRECTOR of the normal energy transport chain resulting in increased levels Mary Ann Caputo of destructive products within the cell. This low level laser energy has beneficial effects by producing dissociation of nitric oxide (NO) MEDICAL ADVISORY BOARD resulting in increased ATP and NO levels boosting cellular function and performance including blood vessel expansion (vasodilator David M. Brizel, MD Kristen B. Pytynia, MD, MPH Duke University Medical Center MD Anderson Cancer Center function) that increases blood-supply to tissues that would have Allen M. Chen, MD Karrie Zampini Robinson, LCSW beneficial effects on inflammation and wound healing. University of California, Irvine Fighting Chance, Sag Harbor, NY David W. Eisele, MD, FACS David L. Schwartz, MD A second PBM mechanism involves absorption of light by Johns Hopkins Univ. School of Medicine The Univ. of Tennessee Hlth. Sci. Ctr. photosensitive cell membrane receptors and transporters. This has Bonnie Martin-Harris, PhD,CCC-SLP James J. Sciubba, DMD, PhD Medical University of South Carolina Greater Baltimore Medical Center been shown to have a central role in pain relief (analgesia) which David Myssiorek, MD, FACS Elliot W. Strong, MD, FACS, Emeritus are transient and reversible with no permanent damage to the tissues Jacobi Medical Center Memorial Sloan-Kettering Cancer Center David G. Pfister, MD Everett E. Vokes, MD being reported. Memorial Sloan-Kettering Cancer Center University of Medical Center A third PBM mechanism that was recently reported involves Jed Pollack, MD Randal S. Weber, MD, FACS Northwell Health MD Anderson Cancer Center generation of very low amounts of extremely reactive chemical intermediates termed Reactive Oxygen Species (ROS), which have several biological targets including a latent protein called TGFβ-1. NEWSLETTER EDITOR This growth factor has several potent biological roles on a wide Chris Leonardis variety of cell types such as epithelial cells, fibroblasts, endothelial News From SPOHNC is a publication of cells and macrophages. One of many key functions of this factor Support for People with Oral and Head and Neck Cancer, Inc. is to effect wound healing by promoting cell migration and matrix Copyright ©2019-2020 synthesis such as collagen and fibronectin. Another fascinating role of TGF-β1 is its ability to harness the regenerative potential DISCLAIMER: Support for People with Oral and Head and Neck Cancer, Inc. does not endorse any treatments or products mentioned in this newsletter. of naturally present adult stem cells located in tooth pulp, mucosa Please consult your physician before using any treatments or products. and bone marrow, which promote tissue regeneration. A better understanding of these mechanisms in these clinical scenarios will enable more robust, reproducible clinical protocols to speed recovery. IN THIS ISSUE The less-trodden path from the lab to the clinic The well documented track record of the clinical safety and In Memoriam...... 4 effectiveness of photobiomodulation therapy is of note. The oft cited Head and Neck Cancer News...... 5, 6 ‘pyramid of evidences’ for clinical practice identify the most credible The Recipe File...... 7 findings as those performed by systematic reviews and meta- Time For Sharing...... 8 analyses, where the validation of this approach will be confirmed. In Spotlight On...... 9 addition to the advances made in the laboratory, an important update SPOHNC Celebrates You!...... 10 to the clinical practice guidelines was recently announced by the Chapters of SPOHNC...... 11 Multinational Association of Supportive Care in Cancer (MASCC). LIGHT THERAPY continued on page 3

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LIGHT THERAPY continued from page 2 It recommends PBM therapy as a routine pain ailments, it appears we may have a treatment for cancer therapy-induced OM. A viable alternative for managing pain due group of global experts rigorously analyzed to oral mucositis. The use of biophysical Meeting the Challenges data from 35 randomized, blinded human pain management approaches, such as of Oral and Head studies and concluded that there was clear neurostimulation and PBM therapy, offer an and Neck Cancer data supporting the use of PBM therapy to attractive alternative to reduce both exposure prevent and treat oncotherapy-induced OM. and prescription of opioids. Hopefully these A Guide for Survivors The clinical benefits of this non- novel and safe to use technologies will and Caregivers invasive, non-pharmacological treatment become more routinely employed in the Second Edition appears to be a sustainable, cost-effective near future. and safe approach with no reported side Editors Note: Jaeyoung Choi is a second effects. year dental student at University at Buffalo Several regulatory agencies and policy School of Dental Medicine (UB SDM) in institutes including insurance companies, Buffalo, NY. He had also served as a Non- now recognize PBM therapy as a useful Commissioned Officer in U.S. Army Reserve clinical intervention, with commercially and recently was commissioned via Army available devices that can be used both intra- Health Professions Scholarship Program. by Nancy E. Leupold & orally or extra-orally. He has been pursuing research since his Studies concerning the role of PBM in undergraduate at UB as a Biomedical James J. Sciubba, DMD, PhD supportive cancer care have garnered much Science major and has continued his attention, with a broad range of treatment research interests as a dental student in the Learn about Treatment Options, applications from fibrosis (trismus) to Arany lab, Oral Biology department since Nutrition, Quality of Life, taste dysregulation (dysgeusia). Like every Feb 2018. The main topic of his interest therapeutic intervention, there appears to is Photobiomodulation therapy for oral Pain, Oral Care, be a range of PBM device parameters and cancer care treatments in management of Insurance Issues delivery techniques requiring attention. oral mucositis and altered taste sensation. Another important aspect of this treatment Up on his expected graduation in 2022, he $27.00 includes shipping and handling will serve as a dental officer in the Army. He is that is can be used to reduce the incidence Place your order today at spohnc.org of pain associated with OM lesions when looks forward to serving our country with his performed before and during actual clinical and research skills and knowledge. or call 1-800-377-0928 treatment. This has significant implications Praveen R. Arany received his dental for the use of this treatment with routine degree and completed a joint PhD-Residency “Outstanding organization dedicated oncotherapy as it appears to pre-condition program in dental medicine at Harvard to getting people through the uncertainty the tissues and improves both physiological University as a Harvard Presidential surrounding diagnosis, treatment, recovery and psychological resiliency in undergoing Scholar. He has two certificates in clinical and then adjusting into being a survivor.” cancer treatments. translational research from Harvard ~ John C. Medical School and National Institute of A Br-(L)-ight Future! Health. He pursued postdoctoral fellowships There is increasing realization of the oral- at Indian Institute of Sciences, National systemic connection that emphasizes good Cancer Institute and Harvard School of oral care as a key constituent of overall Engineering & Applied Sciences. He served general health. The key role of clinicians as an Assistant Clinical Investigator at involved in cancer care is perhaps best NIDCR, NIH, Bethesda. He is currently exemplified by the management of oral an Assistant Professor in Department of mucositis. This appears to showcase the Oral Biology and Biomedical Engineering, central role for the oral care specialist in the University at Buffalo. Dr. Arany currently 2030 UNESCO oral health paradigm. The holds various key leadership positions specific area of research around PBM therapy including the current President of the appears to have tremendous implications World Association for Photobiomodulation for cancer care as well as overall human Therapy (WALT). His primary research health. The use of opioids in cancer care has focuses on the molecular mechanisms and brought renewed attention to the potentially clinical translation of Photobiomodulation limitations and detrimental side effects of Therapy. these drug-based treatments. While opioids NOTE: are extremely effective medications for Address correspondence to: various cancer-associated and other chronic [email protected] Make a Difference. Give a Gift Today. Page 4 _ September 2019

IN MEMORIAM George “Eugene” Staggs SPOHNC was deeply saddened to learn he struggled with communication. That and still means to me, that someone believed of the passing of Gene Staggs, who was a took a lot of strength and determination. I I could go through all my cancer treatment long-time attendee and also much beloved will miss him! and still graduate, which I was able to do. Co-Facilitator of SPOHNC’s Arkansas More thoughts came pouring in from Gene will always be loved and remembered Northwest Chapter Support Group for an other group attendees about their beloved by me and my family. extended period of time. Gene passed away friend…. Jack and Temple shared this as well, Tuesday, May 21st. Pattie Lanning shared…During one about their dear friend…The last time he Gene was an accomplished professional of the first SPOHNC meetings that I met attended our meeting, April 20, 2019, he left and well-loved by friends and family. He Gene, I realized we were not only survivors a little early, probably to see an Arkansas always did everything he could to participate of tonsillar cancer but neighbors in west sporting event. Temple mentioned to me that in and promote SPOHNC and the Chapter Fayetteville also - within a few blocks he looked rather frustrated that he couldn’t support group. Thoughts from the group of each other. We also were both treated speak. Unfortunately, his capability to speak were shared about this kind, caring and at UAMS Winthrop Rockefeller Cancer seemed to be getting more difficult over committed man… Institute, in Little Rock. the past few months. He will be missed Jack and Temple Igleburger, Facilitators I saw Gene in the neighborhood before immensely by his family, many friends, and of the group, shared…Gene was Temple and I moved away in 2016. At that time, he was our SPOHNC members that had the privilege my choice to take over the group before he happy & doing well - enjoying survival - to know him. was diagnosed with a new cancer. We shared and LIFE. I am so glad to hear that these Ronnie, Temple and I attended Gene’s with Mary Ann that he was our assistant last 5 years were very good for Gene. I’ll memorial service at Central United Methodist facilitator a couple of years ago. We knew think of him as when those days were more Church, in Fayetteville. Afterwards, we he was dependable, never missed a meeting plentiful. Please know that my heartfelt talked briefly with June Staggs and paid our (unless it was hunting season) and was condolences are with Gene’s family at this respects. always looking for newsworthy information most difficult time. Gene’s son, Stuart Staggs, thanked us to share with the group about hopeful new The group’s youngest attendee, Rita for attending his father’s service. He also treatments, speakers to consider Avila, 29, who is commented about the positive support Gene and other helpful bits and pieces an incredible young received from our SPOHNC group. Stuart for our group. He facilitated woman, shared this planned to attend a future SPOHNC support several meetings after I was with SPOHNC…I group meeting to thank the group in person. treated and recovering from my met Gene through the SPOHNC recognizes the dedication and 2nd oral cancer in early 2016. SPOHNC meetings tireless efforts of Gene as he stepped in to Gene was always positive of our local chapter. facilitate and inspire the Arkansas Northwest and looking forward to As we got to know Chapter. Gene and his family will remain in participating in the meetings. each other, we learned SPOHNC’s thoughts and prayers. Even when his speech got so bad from we had the same profession - Industrial this last cancer, he made it to the meetings Engineering! I was still in school and had because he wanted to be part of the group. gone through two bouts of cancer battles Ironically it wasn’t cancer that finally beat while trying to get my degree. Needless to him. It was a stroke! say, I was extremely surprised when I was Temple noticed that during the last pulled in to one of my professor’s offices meeting he attended, Gene wanted to and told that I’d be receiving scholarships speak and share something; but he knew he to help me pay for my education, and one wouldn’t be understood because his speech of those was the Gene and June Staggs had worsened as far as clarity. You could tell scholarship - Gene had personally gone to “Grief is never something you get by the look in his eyes. Unfortunately, that the University of Arkansas IE department to over. You don’t wake up one morning was his last meeting. say he wanted ME to have his scholarship! and say, ‘I’ve conquered that; now Support group attendee Lissa Applewhite I was so grateful, I thanked him personally I’m moving on.’ It’s something that shared her thoughts with SPOHNC also…I next time I saw him, and I received an walks beside you every day. And if was inspired by Gene from the beginning.... award with the scholarship’s name that sits you can learn how to manage it and positive attitude, words of encouragement, in my home to this day. He was a wonderful honour the person that you miss, you and helpful tips from his experience. Then person, even getting me in touch with his can take something that is incredibly as his difficulties began, he still remained son, Stuart, so I could ask him for advice sad and have some form of positivity” positive, I know that was hard for him but since his son was an Industrial Engineer as ~ Terri Irwin he continued to attend meetings even when well. I’ll never forget how much that meant,

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HEAD AND NECK CANCER NEWS Palbociclib plus cetuximab shows antitumor activity among head and neck cancer subset August 20, 2019 - A combination of and those in group 2 for a median 5.5 months as standardized, cost-effective therapies palbociclib and cetuximab demonstrated (IQR, 4.3-8.3). in recurrent and metastatic HNSCC,” the substantial antitumor activity among patients Among 28 evaluable group 1 patients, authors wrote. “Bringing this class of drugs with platinum- or cetuximab-resistant 11 (39%; 95% CI, 22-59) attained an to head and neck oncology clinics, as either HPV-unrelated head and neck squamous objective response, including three complete monotherapies or immunotherapy partners, cell carcinoma, according to results of a responses. Repeat scans confirmed all but will require appropriately controlled studies multigroup phase 2 trial published in The one of the responses. Half of the group 1 linked to biomarker evaluation with both Lancet Oncology. patients (n = 14) had stable disease and three survival and cost-effectiveness endpoints.” “Currently, effective therapeutic (11%) demonstrated progressive disease. Disclosures: Adkins reports research options for patients with cetuximab-resistant Median duration of response was 4 months funding from Pfizer as part of the work HNSCC are few. Traditional chemotherapy (IQR, 1.8-5.6), median PFS was 5.4 months presented in the study; personal fees for has marginal activity, with 6% of patients or (95% CI, 3.4-7) and median OS was 9.5 advisory/consultant roles from Celgene, fewer achieving a tumor response,” Douglas months (95% CI, 5.3-16.5). Cue Biopharma, Eli Lilly, Loxo Oncology, R. Adkins, MD, professor in the oncology Among 27 evaluable group 2 patients, Merck and Pfizer; and research funding from division of the department of medicine at five (19%; 95% CI, 6-38) achieved an AstraZeneca, Atara, Blueprint Medicine, Washington University School of Medicine objective response, including one complete Bristol-Myers Squibb, Celgene, CellCeutix, in St. Louis, and colleagues wrote. “The response. Four of the responses were later Celldex, Eli Lilly, Enzychem, Exelixis, most effective therapy for these patients confirmed. Thirteen of the group 2 patients Gliknik, Kura, Matrix Biomed, Medimmune might be pembrolizumab [Keytruda, Merck] (48%) had stable disease and nine (33%) Innate, Novartis, Pfizer and Polaris outside the or nivolumab [Opdivo, Bristol-Myers demonstrated progressive disease. Median submitted work. Please see the study for all Squibb], which have resulted in responses duration of response was 6 months (IQR, other authors’ relevant financial disclosures. in 11% to 16% of patients and median OS 2-15.5), median PFS was 3.7 months (95% Vokes reports consultant/advisory roles of 6.9 months to 8 months. Novel treatment CI, 2.9-4.3) and median OS was 6.3 months with AbbVie, Amgen, AstraZeneca, Bristol- strategies are needed for patients with (95% CI, 4.9-10). Myers, Celgene, EMD Serono, Genentech, recurrent or metastatic HNSCC.” In each group, only one patient with Merck, Novartis and Regeneron. Strohbehn The combination of the cyclin- a tumor response previously had received reports no relevant financial disclosures. dependent kinase (CDK) 4/6 inhibitor immunotherapy. palbociclib (Ibrance, Pfizer) and epidermal The most prevalent grade 3 to grade 4 growth factor receptor inhibitor cetuximab adverse event associated with palbociclib Have you (Erbitux, Eli Lilly) appeared safe and was neutropenia, which occurred in 34% or someone you know tolerable in the phase 1 portion of the (n = 21) of all patients. The researchers did been affected by multicenter trial, conducted across eight U.S. not document any treatment-related deaths. university sites. The researchers cited various limitations Oral, Head For phase 2, Adkins and colleagues to their study, including its single-group and Neck Cancer? divided 62 patients with HPV-unrelated design, and noted that the results will need HNSCC (median age, 66 years; interquartile to be confirmed in a controlled trial with a Show your support! range [IQR], 58-70; 71% men) into two larger sample size. They acknowledged that groups: those who were platinum-resistant immunotherapy might have affected OS (group 1; n = 30) and those who were outcomes, and that the study design did not resistant to cetuximab (group 2; n = 32). permit the evaluation of whether palbocilib’s Primary tumor sites included the oral cavity antitumor activity occurred directly or by (42%) and larynx (29%), and 81% of patients reversal of primary cetuximab resistance. had received one or two prior lines of These data suggest a need for further Purchase your treatment for metastatic or recurrent disease. study of palbociclib in patients with recurring SPOHNC wristband All participants received oral palbociclib or metastatic HNSCC, according to a related today. (125 mg daily on days 1-21) and IV editorial by Garth W. Strohbehn, MD, cetuximab (400 mg/m2 on day 1 of cycle one, hematology/oncology fellow at University followed by 250 mg/m2 once weekly) in 28- of Chicago, and Everett E. Vokes, MD, Go to spohnc. org day cycles. Objective response, defined as professor of medicine and radiation oncology or call 1-800-377-0928 complete and partial responses per RECIST physician-in-chief at to order yours today. 1.1 criteria, served as the primary endpoint. Medicine. Researchers followed patients in group “However, we should be circumspect 1 for a median 5.4 months (IQR, 4.4-12.1) about the prospect of CDK 4/6 inhibitors

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HEAD AND NECK CANCER NEWS Surgical planning for head and neck cancer benefits from FDG-PET/CT A new Journal of Clinical Oncology report associated with substantial complications participants (5 percent), this led to fewer immediately informs practicing clinicians for patients. planned dissected nodal levels. Negative of the effectiveness and benefits of FDG- “A negative scan in the cN0 neck has PET/CT scans in N0 necks were true PET/CT in head and neck cancer patients, been demonstrated by our study to have a negative in 87 percent and false negative especially those who are clinically node- very high negative predictive value,” said in 13 percent. negative. co-principal investigator and co-author “This trial is an excellent example of a The Journal of Clinical Oncology Brendan C. Stack, Jr., MD, a surgeon at means to implement personalized medicine has published the results of the largest the University of Arkansas for Medical in the setting of head and neck cancer prospective multicenter trial conducted Sciences. “Additionally, the positive PET management,” said Dr. Stack. of FDG-PET/CT in head and neck leads the surgeon to consider resection ### cancer, providing rigorous data about its of nodal levels that might harbor occult performance. The nonrandomized phase metastatic disease.” two trial, ACRIN 6685, followed 287 Participants older than 18 years of We Have Walked In Your patients with newly diagnosed stage T2 to age with newly diagnosed, first-time head T4 disease, all being considered for surgery and neck squamous cell carcinoma were Shoes: A Guide to Living when at least one side of the neck had no recruited from 22 qualified sites in the With Oral, Head and Neck evidence of lymph node involvement based United States and one in Beijing, China. Cancer Second Edition on a physical exam, preoperative MRI FDG-PET/CT was compared with pathology and/or a CT evaluation (clinically node- findings at neck dissection. Participants all negative or cN0). It found that FDG-PET/ received a pre-surgical FDG-PET/CT scan CT imaging achieved a true negative in 94 to which the surgeon was initially blinded percent of patients (by standardized uptake and a contrast-enhanced MRI or CT scan of value (SUV) analysis), or 87 percent of the neck (all within four weeks of surgery). patients (by visual assessment). The trial was The surgical plans were devised by designed and conducted by researchers in the the local surgeons on the basis of physical by Nancy E. Leupold ECOG-ACRIN Cancer Researcher Group examination and CT and/or MRI results, & James J. Sciubba, DMD, PhD with support from the National Cancer but not PET/CT and thereafter formulated Institute, part of the National Institutes of with the available PET/CT result. Both $14.95 includes shipping and handling. Health. plans were collected prospectively with “The information provided by FDG- questionnaires. All data were anonymized Bulk order pricing PET/CT of the cN0 neck changed the to protect the identities of the participants. 25+ books $13.50/book surgical plan 22 percent of the time,” said FDG-PET/CT scans and pathology 50+ books $12.50/book including the study’s principal investigator and lead findings were available for 270 cN0 neck shipping & handling. author Val J. Lowe, MD, a nuclear medicine sides from 212 participants. Pathology was specialist at Mayo Clinic in Rochester, MN. randomly over-read by a central pathologist For bulk orders “These findings suggest that FDG-PET/CT and all scans were reviewed by a team of please call 1-800-377-0928 may assist the clinician in deciding on the central readers. For visual assessment, the or email us at [email protected] best therapy for the clinically N0 neck in negative predictive value (NPV) specific head and neck squamous cell carcinoma, to the cN0 sides was 0.868 (95 percent CI, possibly preventing patient morbidity and/ 0.803 to 0.925). For dichotomized maximum or saving significant costs.” SUV, the NPVs specific to the nodal basins The reliability of FDG-PET/CT in were 0.940 (95 percent CI, 0.928 to 0.952) detecting lymph node metastases in head and and 0.937 (95 percent CI, 0.925 to 0.949) neck cancer is well proven and is reported at prespecified cutoffs of 2.5 and 3.5, to be cost-effective in staging patients respectively. The optimal cutoff maximum with cN0 necks. Most of the data is single- SUV was determined to be 1.8, with an NPV institutional and retrospective. Surgeons of 0.942 (95 percent CI, 0.930 to 0.953). often perform elective neck dissections The FDG-PET/CT-informed surgical in patients with cN0 necks at high risk treatment plan was changed in 51 of 237 for recurrence because clinical exam and participants (22 percent) compared with structural imaging do not reliably identify the PET/CT-blinded surgical plan. In 34 all metastatic disease. This approach has participants (12 percent), this led to planned photo courtesy of PJ Jordan, Caregiver, been found to improve survival but may be dissection of additional nodal levels. In 12 NSVN Volunteer and extraordinary woman

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“Souper” September Recipes from SPOHNC WANTS TO “Eat Well Stay Nourished A Recipe and Resource Guide SHARE YOUR NEWS! For Coping With Eating Challenges” Compiled and Edited by Nancy E. Leupold, Survivor, Founder & President Emeritus Send us your birthdays, good news, Chapter News Chicken Gumbo (from Volume One) and Sharing Stories 2 skinless boneless chicken breast halves 3 Tbsp. vegetable oil Inspire Someone Today 1 ½ c. chopped onion ½ c. green pepper 1 clove garlic, minced 1 Tbsp. flour 2 qt. water 2 chicken bouillon cubes 1 bay leaf Contact SPOHNC at 1 c. white rice 1-800-377-0928 or 1 Tbsp. sugar e-mail us 1 c. tomato sauce at [email protected] 1 tsp. Worcestershire sauce ¼ tsp. fried thyme 1 -10 oz. package frozen okra, thawed and chopped with stem caps removed 2 - 14 oz. cans stewed tomatoes, chopped

TOGETHER Saute chicken in vegetable oil. Cool and cube. Set aside. To the remaining oil, add onion, green pepper and garlic. Saute until onion is transparent. Blend in and brown slightly 1 WE HEAL tablespoon flour. In large soup pot, heat 2 quarts water. Add chicken bouillon cubes and bay leaf. Stir in chicken cubes and onion mixture. Add sugar, white rice, stewed tomatoes, tomato sauce, Worcestershire sauce, dried thyme and okra. Bring to boil and simmer one hour. Yields 6 – 15 oz. servings. 338 calories per serving. Note: When I was undergoing radiation therapy, both my taste buds and my salivary glands took quite a beating. One of the dishes I could eat and tasted right was chicken gumbo. My husband, the resident , made it and ate it with me just about every other day throughout those challenging months. If you’re short on saliva, here’s a recipe that helps make up the difference. ~ Susan B., Washington Applesauce Cake – (from Volume Two) 1 c. sugar ½ c. butter Want to help someone 2 eggs who is just beginning ½ tsp. salt their cancer journey? ¾ tsp. cinnamon ¼ tsp allspice Join our National Survivor ¼ tsp. cloves Volunteer Network Pinch of nutmeg 1 c. raisins 2 c. flour Start a SPOHNC Chapter 2 tsp. baking soda Support Group 1 tsp. vanilla 1 ½ c. applesauce Call SPOHNC to find out how 1 Tbsp. confectioners sugar (for topping) you can Help Make a Difference! Cream sugar and butter. Add eggs, applesauce, cinnamon, allspice and cloves. Sift together flour and baking soda and add to mixture. Add vanilla and raisins. Mix. Pour into greased 1-800-377-0928 loaf pan. Bake at 350 degrees for one hour. Cool in pan. Remove, sprinkle with confectioners sugar. Serves 12. 272 Calories per serving ~ Nancy Leupold, Survivor and SPOHNC Founder - Massachusetts Make a Difference. Give a Gift Today. Page 8 September 2019

Time for Sharing... A Testament to Faith/Grace (Jesus) This is not a story but a testament of a journey of daily radiation (twenty minute sessions) Head and Neck of faith. At the end it was proclaimed by an with some outpatient chemotherapy two Cancer Symposium MD: “Your faith did more for you than any days a week. On behalf of SPOHNC, we would medicine I ever gave you.” Each day during chemo was a struggle to like to introduce you to an event Spring 1992, shortly after my 45th set about. Very weak. However, determined spearheaded by the American Head and birthday, a bump appears. I dismiss it. each day to rise, dress and begin my day. Neck Society (AHNS) and the Head Faith/Grace say look, prevent! “an ounce All to maintain some facsimile of normalcy. and Neck Cancer Alliance. SPOHNC of prevention is worth a pound of cure.” A After all yes, I did have cancer, but, cancer is partnering with both organizations medical clinician detected a lymph node. did not have me – Faith/Grace to host a one day Head and Neck Further examination revealed a tumor. ENT Once up, I made rounds about the ward Cancer Survivorship Symposium in urged a biopsy on coming Monday. I say to exhilarate others. (Faith/Grace carried Chicago, July 18, 2020 at the Hyatt nothing of the tumor over the weekend. me). I was advised not to get close to the Regency from 10am – 4pm. There is Pronouncement of a tumor would incite other patients for they well may not be there no registration fee to attend. worry. Worry is not Faith. Nothing can be the next day. But Faith/Grace encouraged: Symposium topics will include: done at this time. No need to alarm, perhaps, “you lift them, that lifts you and together dental care, survivorship care plans, unnecessarily? I remind myself. you all rise.” exercise, nutrition, advocating for Biopsy affirms At the oneself and more. There will also “cancer.” ENT reports end of my be discussions about issues such as this directly to my wife, day I made swallowing, caregiver needs and many who brings it to me (in a summary more topics of great concern. the recovery room) with of my Attendees will also be invited worry, concern and fear. visits and to the opening day address of the My response: “Trust in entered the American Head & Neck Society’s God with all your heart activities meeting on Sunday, July 19th, featuring and all your soul and into my speaker, Grant Achatz, a renowned lean not to your own journal. Yes, chef and survivor of stage 4 squamous understanding.” a journal. It cell carcinoma. We seek another helped me Head and neck cancer survivors opinion. This physician displays a plaque track my care and divert my thoughts from and caregivers interested in learning in his office that reads: “anticipate miracles” chemo. It was my new gig. This journal, more, please sign up to receive The right man at the right time – Faith/ that I still have today, is a reminder of how additional information at: https://www. Grace. “There is no medicine like hope, far I have come and a comfort in bad times. headandneck.org/symposium/. no incentive so great, and no tonic so In addition, I received many cards, powerful as expectation of something handicrafts, well wishes, and prayers from up with aggressive physical therapy to tomorrow” – Orison Swett Marden most especially my pastor, my church restore the neck and swallow therapy to aid Second opinion, substantiates cancer but anointment group, the six musketeers (my swallowing with my newly deformed throat. another type. All oncologists gather (tumor wife and special friends). I placed the cards Another principal battle scar. board). It’s stage 4 nasopharynx cancer. and handicrafts in a gift bag (a Christmas Then, began the wait. Mindful it could Prognosis: very short rate of survival (ten gift bag). I place that bag under the tree be very short. A year passed. Three years percent, I recall). each Christmas as a reminder and I value passed. Six years passed. “Maybe out of We develop a treatment plan. (we, for it above all other presents. I visit this bag the woods possibly”? And voila, here we I questioned as well. “Evidence tells us that throughout the year especially in bad times are twenty eight years later. supporting patients to be actively involved over the course of this illness. Mostly, my PRAISE: FAITH/GRACE (JESUS)! in their own care, treatment and support good days outweighed my bad. ~ Aaron Parker, can improve outcomes and experience for Immediately following chemo, radiation ~ [email protected] patients, and potentially yield efficiency began and continued for eight weeks. Over savings for the system through more the course of radiation and sometime personalized commissioning and supporting afterwards it became necessary to remove people to stay well and manage their own all of my teeth due to effects from radiation conditions better. england.nhs.uk) exposure. A principal battle scar. It’s decided chemotherapy 24 hours a Finally, surgery (radical neck dissection) day for one week. Two week rest and then to remove lymph nodes (seventy in all) so the second round of identical chemotherapy for cancer would not have any place to return. another week, followed by six to eight weeks Another principal battle scar followed

S•P•O•H•N•C P.O. Box 53 Locust Valley, NY 11560-0053 1-800-377-0928 Page 9 September 2019

SPOTLIGHT ON Eat Well Stay Nourished A Recipe SPOHNC’S MEDICAL ADVISORY and Resource Guide for Coping With Eating Challenges David A. Schwartz, MD compiled by Attempting ‘Something Remarkable’ Nancy E. Leupold, Survivor, Founder and President Radiation Oncologist “Coming to Memphis gave me the Emeritus Targets Cancer Inequities opportunity to do something remarkable, By LAWRENCE BUSER to a cancer disparities program in direct $20.00 includes shipping and handling. partnership with its home community,” he When David Schwartz, MD, was finishing said. “I came with the purposeful intent to • Recipes & Information About Eating college at Stanford, he wasn’t sure what create a health disparities and outcomes Challenges and Nutrition was next. research center in radiation oncology. It’s • Suggestions and “Tips from the Pros” There was the first of its kind in the United States.” possibly law Dr. Schwartz is now helping to lead the Eat Well Stay Nourished A Recipe school, a career in creation of a new academic cancer center and Resource Guide literature or a few spearheaded by Methodist Le Bonheur for Coping With Eating other options, but Healthcare and UTHSC. “We are building Challenges - Volume 2 st compiled by medical school a 21 century cancer center from the Nancy E. Leupold, didn’t top the list. ground up. My partners are the best of the Survivor, Founder “I had best; they’re national experts from big- and President Emeritus worked as a camp time places. We’ve faced up to the fact $23.00 includes shipping and handling. counselor every that Memphis has never had a nationally summer, and then recognized academic referral center for adult • New Recipes I got an opportunity to be a counselor cancer like St. Jude Children’s Research • Chapter Devoted to Fortifying Foods • Nutritional Information Included with Every at Camp Ronald McDonald in Los Hospital, and, simply put, it deserves one. Recipe Angeles, one of the first camps in the “But this center has to fit Memphis, U.S. specifically created for kids with not the other way around. We are framing Two Volume Set $40.00 includes shipping and cancer,” Dr. Schwartz recalled. “It was the center as being not just a partner with handling.Order at spohnc. a life-changing experience. It was so the community, but as a true part of the org or contact SPOHNC at formative, so emotionally resonant that community. We are picking what is the 1-800-377-0928 it placed me on a new path. I wanted to best of Memphis - the authenticity, the be a cancer doctor.” soul, the culture - and mixing it with what’s After medical school at UCLA, Dr. best from outside Memphis. We will bring Schwartz trained and worked at some of the best technology and talent from across the leading cancer research centers in the country and place it into the hands of Shopping ??? the country, including Fred Hutchinson our neighbors and our clinical colleagues Remember to Cancer Center in Seattle, MD Anderson practicing in the region.” Choose SPOHNC Cancer Center in Houston, and UT There may not be a better place or as your Charity of Choice. Southwestern in Dallas. greater need for such an ambitious project In 2016, with a curriculum vitae the than Memphis, with its large medically size of a phone book, Dr. Schwartz was underserved populations and high poverty recruited to Memphis as Vice-Chair in levels. Rates of cervical cancer, head & the Department of Radiation Oncology neck cancer, breast cancer and lung cancer at the University of Tennessee Health are among the highest in the nation. Much Science Center-West Cancer Center. He of that, he said, is preventable. currently serves as interim chair of the “If you look at the instances and risks Department of Radiation Oncology at for hypertension, diabetes, obesity, chronic the UTHSC College of Medicine and renal failure, stroke or heart attack, it walks AmazonSmile is operated by Amazon with the is also Professor in the Department of hand in hand with cancer risk,” Dr. Schwartz same products, prices, and shopping features Preventive Medicine. said. “I really harp on my patients to get as Amazon.com. The difference is that when As founder and director of the Center primary care and focus on their overall you shop on AmazonSmile, the AmazonSmile for Health Equity, which is part of the health, for themselves and their families, Foundation will donate 0.5% of the purchase Center for Innovation in Health Equity because cancer is the stalking horse for just price of eligible products to the charitable Research at UTHSC, Dr. Schwartz has about every chronic illness you can think organization of your choice. found Memphis to be a perfect fit. of.” continued on page 10

Shop with Amazon Smile & Choose SPOHNC Page 10 September 2019 continued from page 9 He envisions a more proactive approach realistic about the profound social realities Center for Innovation in Health Equity to healthcare that not only helps current and disparities impacting our city. But Research. Thurston is an assistant professor patients, but also reaches out to their families I believe it’s ironic and happily fixable, in the Department of Psychology and is an and neighbors to prevent cancer through that the most under-utilized community- adjunct assistant professor in the Department healthy living. based cancer fighting resource is our own of Pediatrics, UTHSC/Le Bonheur Pediatric “What we as Americans think of as medical community here in Memphis. We Obesity Program. healthcare focuses mostly on restoring purposefully will never create a specialty The young students would take a health after it has been lost, which is the center ‘black hole’ for doctors to refer fundamentals of science research course and wrong time to jump into the fight,” Dr. patients to, never to hear from again. We’re then, working with their teachers, scientists Schwartz continued. “We need sustainable, partners. and doctors, formulate their own research affordable, authentic ways to nurture health, “We plan to work with our colleagues questions and research plans to answer those to keep it intact in the first place. How can we entrusting us with their patients. We will questions. engage with our neighbors to ensure we can study and establish holistic healthcare “We envision the projects being focused all flourish in a more healthful city without pathways which provide not only durable on real world issues that the kids see as expensive medications or procedures? We cures but also durable health, for everyone. directly relevant to their own neighborhoods are focusing many of our current research This is my personal mission at the medical and their own lives,” Dr. Schwartz explained. projects on this question. school. It is also shared as a mission, I “This could be something as straightforward “Nobody knows what one individual’s believe, by everybody I’m blessed to work as hypertension control and its relationship cancer comes from, but we all know with.” to cancer risk, or as profound as trust and instinctively that the way you live your Since Dr. Schwartz is seeking to bring trauma issues impacting their neighbors’ life, the things you’re exposed to, your cancer care directly into the worlds of relationships with cancer providers. family background, and maybe even your patients to make them active partners in the “They will apply for grants, get emotional and psychological state - all of quest for good health, why not start early? resources, literally own their projects, and these things weave together into a tapestry The radiation oncologist’s work recently then present their results in a local scientific that determines whether you thrive or don’t.” got the attention of TEDx Memphis, local forum to their community. They may even Dr. Schwartz says he, wife Katherine independent producers of videos featuring get the chance to present at real medical and their two daughters, ages 10 and 12, expert speakers on science, business, meetings and publish in real medical have been taken by the friendliness and technology and other disciplines. journals. We want to train the new energetic soulful charm of Memphis, but he also sees The project that got their attention experts who will replace us, and who will “an underdog mentality” about the city that was a National Institutes of Health grant excite younger students to follow them. is unwarranted, given the medical resources submission that he helps to lead that would There’s never been a program like this in and level of expertise that is here. allow 6th and 9th graders to apply for cancer the country. I think it’s pretty cool.” “We need to raise our expectations research grants in their communities. Editors Note: This article was reprinted of what we have to offer to the city and He is partnering with Michelle Martin, with permision from the Memphis Medical what we can help our city attain on a more PhD, at UTHSC College of Medicine, and News. Author credit to Lawrence Buser - global level,” he said. “Here in Memphis Idia Thurston, PhD, University of Memphis, March 14, 2019. there’s a lot of cancer, and we have to be on the project. Martin is head of the UTHSC ### SPOHNC CELEBRATES YOU! While we were enjoying the summer months, Gail is an asset to SPOHNC. Her we missed a very important occasion…the compassionate ways and her knowledge birthday of someone who is near and dear to of non-profits have been an invaluable our SPOHNC hearts. resource for our organization since we met Happy Birthday Gail her. Always willing to lend a listening ear Fass!!! and a helping hand, Gail gives of herself and Gail is a survivor, her life experience in a way that no one else and has always been can. We love this special lady! a huge supporter Gail – we hope that whatever you did to of SPOHNC. She celebrate your special day, it involved fun, became a volunteer for laughter and lots of celebrating! We wish our National Survivor you a year full of as much love as you share Volunteer Network in with everyone around you. 2003, and is also a member of SPOHNC’s Board of Directors where she holds the Happy Birthday Gail! position of Secretary.

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