Myelofibrosis (MF)

A Guide for Patients Introduction

Being diagnosed with myelofibrosis (MF) can be a shock, particularly when you may have never heard of it. If you have questions about MF – what causes it, who it affects, how it affects your body, what symptoms to expect and likely treatments – this booklet covers the basics for you.

You will also find useful advice Haematologist at University about how to get the best from Hospital of Wales, Cardiff. We your haematologist, plus practical are also grateful to Chris Rogers, advice on how to help important patient reviewer, for his valuable people in your life understand contribution. The rewrite was put such a rare condition. For together by Lisa Lovelidge and more information talk to your peer reviewed by Professor Claire haematologist or clinical nurse Harrison. This booklet has since specialist. been updated by our Patient Information Writer Isabelle Leach This booklet originally written and peer reviewed by Dr Sebastian by Professor Claire Harrison, Francis. We also appreciate Consultant Haematologist Norman Childs and Amy Cross for at Guy’s and St Thomas’ their input as patient reviewers NHS Foundation Trust, and as well as Samantha Robertson subsequently revised by Dr whose husband had MF. Steve Knapper, Consultant

If you would like any information on the sources used for this booklet, please email [email protected] for a list of references.

Version 4 Printed: 10/2020 2 www.leukaemiacare.org.uk Review date: 10/2022 In this booklet

Introduction 2

In this booklet 3

About Leukaemia Care 4

What is myelofibrosis? 6

What are the signs and symptoms of MF? 9

How is MF diagnosed? 10

What is the treatment for MF? 12

Living with MF 26

Talking about MF 28

Glossary 31

Useful contacts and further support 39

Helpline freephone 08088 010 444 3 About Leukaemia Care

Leukaemia Care is a national charity dedicated to ensuring that people affected by blood cancer have access to the right information, advice and support.

Our services has been affected by a blood cancer. A full list of titles – both Helpline disease specific and general Our helpline is available 8:30am information titles – can be – 5:00pm Monday - Friday and found on our website at www. 7:00pm – 10:00pm on Thursdays leukaemiacare.org.uk/support- and Fridays. If you need someone and-information/help-and- to talk to, call 08088 010 444. resources/information-booklets/

Alternatively, you can send Support Groups a message via WhatsApp on Our nationwide support groups 07500068065 on weekdays are a chance to meet and talk 9:00am – 5:00pm. to other people who are going Nurse service through a similar experience. For more information about a We have two trained nurses on support group local to your area, hand to answer your questions go to www.leukaemiacare.org. and offer advice and support, uk/support-and-information/ whether it be through emailing support-for-you/find-a-support- [email protected] or group/ over the phone on 08088 010 444. Buddy Support Patient Information Booklets We offer one-to-one phone We have a number of patient support with volunteers who have information booklets like had blood cancer themselves this available to anyone who or been affected by it in some

4 www.leukaemiacare.org.uk way. You can speak to someone Website who knows what you are going You can access up-to-date through. For more information information on our website, on how to get a buddy call www.leukaemiacare.org.uk. 08088 010 444 or email [email protected] Campaigning and Advocacy Online Forum Leukaemia Care is involved in campaigning for patient well- Our online forum, being, NHS funding and drug www.healthunlocked.com/ and treatment availability. If you leukaemia-care, is a place would like an update on any of for people to ask questions the work we are currently doing or anonymously or to join in the want to know how to get involved, discussion with other people in a email advocacy@leukaemiacare. similar situation. org.uk Patient and carer conferences Patient magazine Our nationwide conferences Our magazine includes provide an opportunity to inspirational patient and carer ask questions and listen to stories as well as informative patient speakers and medical articles by medical professionals: professionals who can provide www.leukaemiacare.org.uk/ valuable information and support. communication-preferences/

Helpline freephone 08088 010 444 5 What is myelofibrosis?

Myelofibrosis (MF) is a 2. Secondary myelofibrosis: myeloproliferative This occurs if you have been (MPN) characterised by excessive previously diagnosed with scar tissue. This forms in the bone another MPN such as ET or PV. marrow (soft, fatty tissue inside Primary MF or MF secondary to PV your bones) and prevents it from or ET are very similar in terms of producing normal blood cells. symptoms and treatment. MPNs are chronic disorders where the myeloid stem cells in the make too many abnormal You can get copies of blood cells which do not function booklets on PV and ET properly. by downloading them In the case of MF, the abnormal from our website at www. clonal blood stem cells in the leukaemiacare.org.uk or bone marrow produce mature requesting a hard copy cells that reproduce quickly by emailing support@ and occupy the bone marrow, leukaemiacare.org.uk, causing the formation of scar or calling our helpline on tissue () and prolonged 08088 010 444. inflammation. Clonal describes a cell or organism descended from, There has been some debate and genetically identical, to a about whether or not MPNs are single common ancestor. types of cancer. This is because MF can occur on its own or the word ‘neoplasm’ (new growth) following one of the MPNs, is a term used both for cancers polycythaemia vera (PV) or (malignant ) and essential thrombocythaemia (ET). noncancerous tumours (benign Therefore, the two main types of neoplasms). Because in MF there MF are: is an uncontrolled increase in stem cells, most haematologists : 1. and cancer organisations do This type of MF occurs consider it and other MPNs spontaneously.

6 www.leukaemiacare.org.uk as blood cancers. Whatever it What causes MF? is called, the symptoms and prognosis for patients can vary While the exact cause of MF is widely. Your haematologist will not known, research has shown advise you depending on your that about 80% of patients with individual circumstances. MF have one of three main gene abnormalities, commonly referred Who is affected by MF? to as . These are: MF is a rare disease with an • JAK2 ( 2)-V617F in average incidence rate of 0.1 to 1 about 50% of patients per 100,000 persons per year. • CALR (-R) in about MF can affect anyone. However, it 25% of patients is virtually unheard of in children and very rare in young adults. It • MPL (Myeloproliferative is most commonly diagnosed Leukaemia virus gene in patients between 60 and 70 MPL515L/K) in 5 to 10% of years of age, with a median age at patients diagnosis of 64 years. Additionally, some 10% of patients The incidence of MF is slightly do not have any of the gene higher in men than women, mutations above and are known with incidences per 100,000 as ‘triple-negative’ MF patients. persons of 0.59 compared with Patients who have triple-negative 0.3, respectively. There is no MF have a poor prognosis. significant difference between the In the majority of cases, MF is not incidences of MF in Europe, North inherited and therefore cannot America and Australasia. The be passed on to your children, incidences of MF by race is very with the exception of MF in similar, except for a noticeably descendants from Ashkenazi higher incidence in those of Jews. Ashkenazi Jewish descent, where a family history is involved. Some researchers believe MPNs may be triggered by past

Helpline freephone 08088 010 444 7 What is myelofibrosis? (cont.)

exposure to ionising radiation (a type of radiation that has very What are stem cells? high energy, like medical x-rays Stem cells are the most or nuclear fallout) or to some basic cells in the body chemical substances such as that have the ability benzene and toluene. to develop into any of the body’s specialised New genetic mutations that are cell types, from muscle associated with MF continue to cells to brain cells. be discovered and it is likely that, They are found in many in most patients, the disease is organs and tissues of caused by a combination of these the body and replenish mutations. any cells that have been lost or damaged. Factors that increase the risk Blood stem cells (called of getting MF other than the haematopoietic stem presence of the JAK2, CALR and cells) are found primarily MPL mutations, are: in bone marrow. There, • Age: MF can affect anyone; they have the potential to however, it is most often develop into mature blood diagnosed in people older than cells, such as red cells, 50 years old. white cells and . • Another disorder such as ET or PV, in which MF can develop. • Exposure to industrial chemicals such as toluene and benzene or very high levels of radiation.

8 www.leukaemiacare.org.uk What are the signs and symptoms of MF?

The essential features of MF changes may lead to some of the are an enlarged , fibrosis symptoms of MF. (scarring) in the bone marrow, Symptoms of MF vary greatly anaemia (too few red blood cells), between patients. While most and symptoms such as fatigue, patients are diagnosed having fever, night sweats and bone pain. presented with some symptoms, The bone marrow normally others experience few or no contains blood stem cells, that in symptoms at all in the early time develop into mature blood stages of MF. In fact, many cells such as: patients are diagnosed after having tests for an unrelated Red blood cells that carry • condition. oxygen to the tissues of your body Patients with MF may have any of the following symptoms or signs: • White blood cells that fight infection and disease • Fatigue • Platelets that help prevent • Sweats (predominantly at night) bleeding by causing the blood Itching (worse after baths or to clot • showers) However, in patients with MF, Bone pain (arthralgia) abnormal clonal stem cells take • over the bone marrow, leading • Muscle pain (myalgia) to chronic inflammation and fibrosis. This results in the bone • Weight loss marrow being unable to make • Fever enough normal blood cells to carry out their functions. • Enlargement of the spleen which can cause abdominal As MF prevents the bone marrow pain, discomfort, loss of from producing normal blood appetite and a feeling of filling cells, the spleen is obliged to take up quickly during meals over producing blood cells, which (sometimes referred to by causes its enlargement. These doctors as ‘early satiety’).

Helpline freephone 08088 010 444 9 How is MF diagnosed?

The diagnosis of MF will usually anaesthetic, using special be made following a series of biopsy needles: liquid bone tests which may be done over marrow (aspirate) and/or a a period of several visits to the tiny core of bone marrow tissue haematology clinic. The current (trephine). diagnosis of MF is based on the Tests for gene mutations – 2016 World Health Organisation • Blood tests may be performed criteria which takes into account to check for mutations in the clinical and laboratory features. patient’s genes. The presence The following tests are required to of genes such as JAK2, CALR determine these criteria: and MPL are helpful for the • Full Blood Count - This is diagnosis, and also provide a routine blood test which information to determine the measures the number of red prognosis. cells, different types of white Abdominal ultrasound scan cells and platelets in the blood. • – Often it will be easy for your The blood is smeared on a haematologist to feel your microscope slide, allowing the enlarged spleen; however, an blood cells to be examined ultrasound might be done in under the microscope. In many patients with a spleen that is patients with MF, this reveals less enlarged. This will also help the presence of immature stem to look for enlargement or cells in the blood that would abnormalities of other organs. normally only be seen in the bone marrow. For patients to be diagnosed with MF, they must meet all 3 • Bone marrow biopsy – In major WHO criteria, and at least 1 most cases, a small sample of minor criterion. The criteria are as bone marrow is needed to be follows: able to identify the abnormal myeloid stem cells and confirm Major criteria the diagnosis of MF. The bone marrow sample can be taken • Rapid increase of abnormal from the hip bone under local (large bone

10 www.leukaemiacare.org.uk marrow cell responsible for Minor criteria the production of platelets), accompanied by reticulin Presence of at least one of the and/or fibrosis. following, on two consecutive Reticulin is a type of fibre in occasions: composed • Anaemia not caused by another of a specialised collagen (type condition III). Reticular fibres crosslink to form a fine meshwork in the • count greater bone marrow. than 11.0x109/L • Not meeting the WHO criteria for • Enlarged spleen which can be any of the following conditions: felt on physical examination • ET • Lactate dehydrogenase (LDH) level increased above the upper • PV normal limit (greater than 300 • CML featuring the international units per litre [IU/L] depending on laboratory). with the BCR-ABL1 gene LDH is an enzyme required during the process of turning • Myelodysplastic sugar into energy for the cells syndromes (MDS) of the body. High levels of LDH indicate some form of tissue Other myeloid neoplasms • damage. Presence of the JAK2, CALR, • Presence of immature cells of or MPL mutations, or in the • myeloid origin and nucleated absence of these mutations, red cells in the circulating blood, presence of another clonal with or without anaemia. This is marker, or absence of reactive called leukoerythroblastosis. MF. Reactive MF is fibrosis caused by infection, an autoimmune disorder, or other chronic inflammatory conditions.

Helpline freephone 08088 010 444 11 What is the treatment for MF?

Currently, the only possible cure becoming resistant to treatment. for MF is an allogeneic stem Current drug treatment can cell transplant (Allo-SCT), which improve the quality of life for involves the transplantation of patients with MF but it has not bone marrow stem cells from a been shown to modify any of suitable matching donor such as the characteristics of MF or a sibling, parent or child. However, prolong patient survival. Regular an Allo-SCT is really only suitable monitoring of symptoms will help for young patients and those track any progression of the MF patients who can withstand the and the efficacy of treatment. intensive required to prepare the bone marrow to Treatment is guided by the receive the donor’s cells. patient’s risk level as determined by the prognostic scoring systems Treatment options and any particularly bothersome While young fit patients with symptoms such as anaemia advanced MF may benefit from an or an enlarged spleen. Often allogeneic stem cell transplant, patients with MF will require a older patients with many combination of treatments. symptoms and may gain greater benefit from Treatments according targeted chemotherapy with a to prognostic scoring JAK inhibitor such as systems . Low risk Experience of treating MF has If patients with MF have no shown it is possible to avoid symptoms when first diagnosed the worsening of MF symptoms (low risk; score=0), a ‘watch by using effective treatments and wait’ approach is often such as ruxolitinib, or recommended at first. Watch hydroxyurea. Symptoms can be and wait usually involves regular stabilised or even made to regress check-ups and blood tests, as well for many years. If symptoms as advice on how to maintain a remain present despite treatment, healthy lifestyle. it is usually an indication that the MF is progressing or it is An exception to this is if the

12 www.leukaemiacare.org.uk patients have been identified as intermediate-1 level MF, the having high risk mutations such symptoms that need treating as ASXL1 (Additional Sex Combs should be assessed and Like-1), SRSF2 (Serine and Arginine discussed between patient and Rich Splicing Factor 2). It is very haematologist. Treatment of a important to screen patients with symptom that is distressing and no symptoms for these ASXL1 limits the patient’s quality of life and SRSF2 mutations because is probably beneficial as long as they will have a poorer long-term it is effective and well-tolerated. prognosis, and if they are suitable In patients with low-risk to for an ASCT, these patients will intermediate-1 level MF, the aim be encouraged to pursue an ASCT of treatment is to decrease the sooner rather than later. enlarged spleen, improve blood cell counts and relieve difficult There are other mutations in symptoms such as anaemia, patients with MF, however, ASXL1 fatigue or muscle pain. and SRSF2 are the most common (36% for ASXL1 and 18% for At present, there is no evidence SRSF2) compared to other gene that the new JAK inhibitor mutations that have incidences of ruxolitinib can reverse bone around 1-5%. marrow fibrosis but it may be effective for relieving symptoms Our booklet on Watch and of MF and reducing the size of the Wait tells you all you need spleen in patients with low-risk to know. You can get a to intermediate-1 level MF who copy by downloading it at required treatment. www.leukaemiacare.org. Intermediate-2 or high-risk uk, emailing support@ level leukaemiacare.org.uk or calling 08088 010 444. Patients with intermediate-2 or high-risk MF have the option of an ASCT, if applicable, or the JAK Low-risk to intermediate-1 level inhibitor ruxolitinib. Treatment In patients with low-risk to for specific MF symptoms are

Helpline freephone 08088 010 444 13 What is the treatment for MF? (cont.)

also available if required as weaker patients, less intense for patients with low-risk to doses of chemotherapy to weaken intermediate-1 level MF. their immune system enough to allow the donor stem cells to grow Allogeneic stem cell in their bone marrow are given. transplants (Allo-SCT) This is called reduced intensity conditioning. However, it has been Allo-SCT is currently the only shown that the Allo-SCT produces treatment that can prolong fewer effective results. survival or potentially cure MF. However, Allo-SCT in patients with Apart from an Allo-SCT, all other MF is associated with at least a treatments used in MF are aimed 50% rate of transplant related at improving quality of life by deaths or life-threatening side controlling symptoms, reducing effects. Consequently, the risk the size of the spleen and of the Allo-SCT to patients must improving the blood cell counts. be justified in terms of their Drug therapy can improve the prognosis. quality of life for patients with MF but it cannot as yet modify the You will be individually assessed characteristics of the disease or because ASCTs are usually only prolong survival. considered as an option for fit patients with advanced disease JAK Inhibitors and who have a matched donor. If you are suitable for an Allo- Ruxolitinib (Jakavi, SCT, you will first receive very Europharm Limited) is a JAK1/ high levels of chemotherapy or JAK2 inhibitor that works by radiation therapy to kill all your blocking the JAK enzymes that abnormal myeloid stem cells in send too many signals for the your bone marrow before receiving production and growth of cells. By the healthy donor stem cells. blocking JAKs, ruxolitinib reduces This is why an Allo-SCT is more the production of the abnormal appropriate for young patients myeloid stem cells in MF, thereby and those patients who can reducing the symptoms that they withstand the preliminary intense cause. chemotherapy. Sometimes, for Ruxolitinib is approved for the

14 www.leukaemiacare.org.uk treatment of an enlarged spleen Until the approval of in or symptoms in adult patients the United States in August 2019, with primary MF, or secondary ruxolitinib was the only available MF following PV or ET. It has JAK inhibitor for treatment of also been recommended by the intermediate-2 or high-risk National Institute for Health and MF. However, fedratinib is not Care Excellence (NICE) for the currently approved in the United treatment of enlarged spleen and Kingdom. symptoms in MF patients with Because of ruxolitinib’s intermediate-2 and high-risk mechanism of action, many disease. patients with MF receiving it In a study of patients with MF, may develop anaemia as the ruxolitinib was compared with haemoglobin levels of patients the best treatment available. decrease over the first few Ruxolitinib reduced bone marrow months of treatment. fibrosis in 15.8% of patients and counts can also be reduced. maintained the fibrosis stable in For these patients, the dose of 32.2%. In addition, approximately ruxolitinib may need adjusting, one third of patients receiving particularly for those patients ruxolitinib showed a reduction in who already have anaemia. In the JAK2 mutations. addition, ruxolitinib is associated with increased risk of infections Although ruxolitinib can lessen which can include shingles, the symptoms of MF, it does not hepatitis B reactivation and modify the disease process or tuberculosis. prevent the risk of transformation to AML. Several other JAK A recent review of the long- inhibitors, such as , term outcome of treatment fedratinib and , are with ruxolitinib in patients with currently under development MF reported a high treatment in clinical trials. However, so discontinuation rate of 92% after far, none of these other JAK2 a median period of 9.2 months. A inhibitors have been shown to ‘ruxolitinib withdrawal syndrome’ reverse bone marrow fibrosis. has also been described following discontinuation of treatment

Helpline freephone 08088 010 444 15 What is the treatment for MF? (cont.)

with ruxolitinib. The syndrome transfusions are common and is characterised by an acute safe procedures and have only a recurrence of symptoms, an very small risk of complications. accelerated increase in the size of However, if you receive a series the spleen, worsening of low blood of transfusions over a number of cell counts, and a septic shock- years, you may have an increased type syndrome caused with a drop risk of iron overload. in blood pressure. Prior to the , Treatment for specific the procedure will be explained MF symptoms to you and you will be required to sign a consent form. You will be Anaemia sat or lying down during a blood transfusion. It normally takes When anaemia is the major less than four hours to receive symptom for patients with MF, it a 500ml bag of blood. You can needs to be treated. Symptoms normally go home shortly after related to anaemia include the transfusion, unless you feel excessive tiredness, weakness unwell. Always tell the nurse if and shortness of breath. you feel hot, cold, shivery, as Generally, the use of hydroxyurea this might be a sign that you or ruxolitinib for anaemia are having a reaction to the associated with MF is ineffective transfused blood. and can sometimes be dangerous. Your haematologist may suggest Erythropoiesis-stimulating some of the following more agents effective solutions: (EPO) is a growth Blood transfusion factor protein normally made in the kidney, which stimulates the A blood transfusion involves the bone marrow to make red blood transfer of red blood cells from cells. It can also be developed in a compatible donor into your the laboratory as a medication body. This will quickly increase to treat anaemia in a range of your count and diseases, including MF. reduce symptoms of anaemia, often within 24-hours. Blood Treatment with

16 www.leukaemiacare.org.uk erythropoiesis‑stimulating flu-like side effects, nausea, agents (epoetin alfa, beta, theta headaches, depression, liver and zeta, and darbepoetin alfa) and thyroid inflammation and are of limited value because diarrhoea. Pegylated interferon, they are ineffective in patients which is a slow-release weekly dependent on transfusions and formulation, is often better may make an enlarged spleen in tolerated with a lower rate of side patients worse. A measurement effects. Pegylated interferon- of the EPO level before treatment alpha has been shown to improve will reveal which patients are anaemia completely in 63.5% of likely to respond to treatment patients. with erythropoiesis‑stimulating , agents. If the EPO level is high and are in patients with MF, then the immunomodulatory drugs that likelihood of it working is very low. help the immune system dispose Other conventional treatments of the abnormal myeloid stem cells in MF, but they can also Other drugs that may improve inhibit their growth. It is reported anaemia in patients with that thalidomide can achieve a MF include modest improvement of anaemia such as interferon-alpha, in 20-60% of patient with MF. immunomodulatory drugs such Side effects of these drugs as thalidomide, steroids such include drowsiness, numbness/ as prednisolone, and androgens tingling of the hands and feet, and such as danazol. constipation. They are more easily Interferon-alpha is a drug made tolerated when administered of purified derivative fractions with prednisolone. However, of white blood cells. It boosts the most importantly, these drugs body’s natural immune system to can cause birth defects, so they fight cancer cells. In MF, interferon should not be given to pregnant alpha suppresses the production women, and women who are of the abnormal myeloid stem sexually active must use effective cells and reduces the size of contraception. the spleen. Interferon-alpha has Prednisolone can be given as

Helpline freephone 08088 010 444 17 What is the treatment for MF? (cont.)

a single treatment usually as hydroxyurea) is one of the after failure of other therapies, most commonly used and the or in combination with other drug of choice for treating the therapies. As a single agent, symptoms of an enlarged spleen it has been shown to improve in patients with MF. It is an anaemia temporarily in 40% of antimetabolite chemotherapy patients with MF. Prednisolone drug which interferes with the is usually more effective when in synthesis of the DNA of cells, and combination with other therapies therefore prevents the growth such as the immunomodulatory or reproduction of the abnormal drug thalidomide. myeloid stem cells in the bone marrow. Danazol is a semi-synthetic male hormone (androgen) which has has shown been shown to improve anaemia reductions of up 50% in the size of in 30% of patients. However, its the spleen in approximately 40% use is often limited by its side of patients. This reduction lasts effects of weight gain, male on average for 13 months. It can pattern hair growth and toxic also be used to reduce the white effects on the liver. It is important blood cell and/or platelet counts to regularly monitor patients on and reduce the symptoms of MF. danazol using liver tests, as well Hydroxycarbamide can cause as screen for liver cancer, and side effects, but generally these prostate cancer in men. are mild. Side effects can include Enlarged spleen lowered resistance to infection, mouth or leg ulcers, anaemia, An enlarged spleen is a common reduced white cell numbers, symptom of MF, often leading to and diarrhoea or constipation. pain, discomfort and a feeling If hydroxycarbamide is used of fullness or a loss of appetite. either alone or in combination Treatment options include the with other chemotherapy drugs following: over a long period of time, it can Hydroxycarbamide potentially increase the chance of the MF developing into acute Hydroxycarbamide (also known myeloid leukaemia (AML).

18 www.leukaemiacare.org.uk spleen which is causing If you would like more symptoms, and have not information about AML, responded to treatment with you can download our hydroxycarbamide, ruxolitinib booklet from our website can be an effective alternative. www.leukaemiacare. In addition, ruxolitinib can also org.uk or request a copy improve other symptoms of MF. by emailing support@ leukaemiacare.org.uk, Other chemotherapy drugs or call our helpline on Other chemotherapy drugs 08088 010 444. such as melphalan, busulphan, cladribine and radioactive JAK inhibitors phosphorous (P32) have been used in patients with MF, but Despite the fact that ruxolitinib they are rarely used nowadays. has not been able to reverse They may, however, sometimes bone marrow fibrosis or induce help when other medications are remissions in patients with MF, it not working or are causing side can, however, lessen symptoms effects. Your haematologist will and reduce the size of the spleen. explain the potential benefits and In MF, the abnormal myeloid risks of these medications. stem cells migrate to organs such as the spleen and the liver. Under normal conditions, the A splenectomy is an operation to spleen normally fights infection remove the spleen, which may be by producing white blood cells recommended for some patients and removes old or damaged if drug treatment has not been blood cells. When bone marrow is successful. prevented from producing normal As the spleen becomes enlarged blood cells by fibrosis, these with the high number of cells organs, the spleen in particular, it is producing and disposing take over producing blood cells, of, it can cause patients severe which causes their enlargement. abdominal pain. In addition, when For MF patients with an enlarged body organs other than the bone

Helpline freephone 08088 010 444 19 What is the treatment for MF? (cont.)

marrow try to make blood cells it and can also relieve other related can be very painful. symptoms, such as bone pain. The high-strength beams kill the Splenectomy is usually abnormal myeloid stem cells. considered to be required if Radiotherapy provides temporary the enlarged spleen is painful, relief that lasts between three and causing complications and six months; however, it may also not responding to any other result in prolonged episodes of treatments. Other symptoms anaemia, as well as lowering of for which splenectomy in MF is the platelet and other white blood considered relevant include very cell counts. low levels of platelets and the need for frequent red blood cell When body organs other than transfusions. the spleen and liver, such as the vertebral column, lymph Splenectomy is a major surgical nodes, and the lining of the procedure which carries (known as pleura), try to make significant risks of complications blood cells, it can be very painful. including infections, bleeding, Lymph nodes are small nodules blood clots and death; therefore, it within the lymphatic system should only be undertaken when network that contain the antibody the spleen is extremely large and producing lymphocytes blood drug treatment is not possible. cells and the macrophage cells A surgical oncologist who is a that digest dead cells. They are doctor specialising in cancer located mainly in the spleen but surgery will usually perform this also in the neck, armpit and groin. procedure. Low-dose radiotherapy can be of Radiotherapy benefit to these patients as well as those who have extremity bone Radiotherapy, which is irradiation pain. of the spleen using high-strength beams such as X-rays, is an Pruritis/itchy skin option if splenectomy is not a viable solution. Performed in Itchy skin is a common symptom hospital, radiotherapy helps to of MF, and can often be worsened reduce the size of the spleen, by exposure to water of any

20 www.leukaemiacare.org.uk kind or temperature. Before The limitation of the use of considering treatments, check ruxolitinib in patients with with your GP or haematologist anaemia and low platelet levels that there aren’t any other causes has prompted the development for the itchy skin (such as thyroid of the second-generation JAK problems or an iron deficiency). inhibitors which do not suppress Also, think about if you have the production of normal red recently changed your soap or blood cells and platelets in the detergent and switch to a soap bone marrow. Three of these substitute if appropriate. second-generation JAK inhibitors, all of which inhibit JAK2, are in Antihistamines the process of being evaluated Antihistamines or related drugs in clinical trials: pacritinib, can be prescribed to relieve momelotinib and fedratinib. itching. Side effects can include a Fedratinib was approved in the sore mouth as well as drowsiness United States in 2019 for the or dizziness. treatment of adult patients with intermediate-2 or high-risk MF, Phototherapy and MF secondary to PV and ET This treatment involves including patients previously exposing the skin to ultraviolet treated with ruxolitinib. light regularly under medical supervision. It works as a Promising new treatments which temporary measure to ease are being investigated include the generalised itching. telomerase inhibitor imetelstat and the anti-fibrosing agent New treatments on the PRM-151. However, these drugs horizon are still in the early stages of development. It is clear from early A number of new drugs including results that imetelstat is active alternative JAK inhibitors, either in patients with MF; however, used alone or in combination its potential to suppress the with other treatments, are being bone marrow requires further actively investigated for the assessment in clinical trials. treatment of MF. PRM-151 is a genetically

Helpline freephone 08088 010 444 21 What is the treatment for MF? (cont.)

modified version of a protein circumstances. However, it is called pentraxin-2 which has important to note that many been developed to prevent and MF patients can have a good reduce fibrosis in the treatment quality of life, with some only of various fibrotic diseases, experiencing a few symptoms. including MF. In patients with Patients with MF have different MF, it has already shown clinical risk factors that have been benefit by reducing symptoms, classified to create ‘prognostic decreasing the volume of scoring systems’ which help the spleen and increasing select the best treatment for haemoglobin levels and platelet patients. counts. Follow-up Prognostic scoring systems There are three main prognostic Follow-up after treatment is scoring systems: an important part of your care. Follow-up for MF is often shared 1. International Prognostic between the cancer specialists Scoring System (IPSS) (oncologists), the blood 2. Dynamic International specialists (haematologists) and Prognostic Scoring System your GP. Your healthcare team will (DIPSS) work with you to decide on follow- up care to meet your needs. 3. DIPSS-Plus • The IPSS is for use at the time of diagnosis, while DIPSS What is the prognosis and DIPSS-Plus are for use of MF? during or after treatment. Risk factors which will influence Prognostic scoring systems the prognosis of patients with are being developed as the MF should be evaluated by knowledge about MF increases. experienced haematologists. Your For example, DIPSS-Plus haematologist is the best person includes information about the to advise you on your prognosis, mutations which help diagnose based on your individual MF.

22 www.leukaemiacare.org.uk IPSS indicate different prognostic risks as seen in Table 2. The IPSS uses the following five independent factors for low Table 2: Dynamic International survival: Prognostic Scoring System (DIPSS) • Age older than 65 years • Haemoglobin less than 10g/dL DIPSS score Risk • White cell count greater than 0 Low risk >25.3x109/L 1 or 2 Intermediate-1 • Abnormal myeloid stem cells 3 or 4 Intermediate-2 greater than 1% of blood cells 5 or 6 High-risk • Presence of symptoms DIPPS-Plus • Each risk factor counts as one The DIPPS-Plus score includes point and the disease prognosis the same risk factor as DIPPS but is determined as shown in Table adds the following three further 1. risk factors: Table 1: International Prognostic • Platelet count less than Scoring System (IPSS) 100x109/L

IPSS score Risk • Need for transfusion 0 Low risk • Presence of cytogenetic changes in the bone marrow. Cytogenetic 1 Intermediate-1 changes are changes in the 2 Intermediate-2 chromosomes that contain the 3 or more High-risk genetic material. DIPSS DIPPS-Plus is therefore calculated using eight risk factors awarding The DIPSS uses the same risk one point for each but has a factors as the IPSS except that different scoring system as shown haemoglobin less than 10g/dL is in Table 3. given two points, and the scores

Helpline freephone 08088 010 444 23 What is the treatment for MF? (cont.)

Table 3: DIPSS-Plus survival for patients can be estimated as a guide. Using the DIPSS score Risk IPSS which is used at the time of diagnosis of patients with MF, 0 Low risk median survivals were estimated 1 Intermediate-1 at 11.3 years for low risk, 7.9 years 2 or 3 Intermediate-2 for intermediate-1 risk, 4.0 years for intermediate-2 risk and 2.3 4 or more High-risk years for high risk patients. DIPSS-Plus, which includes As mentioned previously the information about mutations, DISS-Plus includes details of the levels of platelets and mutations, the levels of platelets dependence on transfusions and dependence on transfusions, has been shown to give a better and therefore has been shown prognosis for patients after their to give a better prognosis for Allo-SCT compared with DIPSS. As patients since it is the most more information is discovered comprehensive. The DIPSS-Plus about the mutations associated which is used during or after with particular groups of patients treatment of patients with MF with MF, new prognostic scoring estimated median survivals of systems are developed such 15.4 years for low risk, 6.5 years for as the Genetically Inspired intermediate-1 risk, 2.9 years for Prognostic Scoring System intermediate-2 risk and 1.3 years (GIPSS). Your haematologist will for high-risk patients. be able to tell you which of these new prognostic scoring systems Transformation to AML has been are applicable for you. reported to occur in 8% to 23% of patients in the first 10 years. A Prognostic scoring systems can number of mutations including be used as guidance either at the ASXL1, EZH2 (Enhancer of Zeste time that the diagnosis of MF Homolog 2), SRSF2 or IDH1/IDH2 is made or at later points in the (Isocitrate Dehydrogenase 1 course of the disease. and 2) have been linked to AML Depending on the prognostic transformation and patients with scoring systems used, median these mutations have shorter

24 www.leukaemiacare.org.uk overall survivals compared with MF patients who do not have You might find it useful to these gene mutations. track your MPN10 score. This is based on marking Patients who display a CALR the most common mutation tend to be younger symptoms of MPNs out of and have good prognosis with 10 based on the severity a median overall survival of 17.7 you are experiencing. This years. Patients with the JAK2 or might also be helpful for MPL mutations have median you when seeing your survivals of around nine years. doctor for a check-up. For Patients with none of these more information, go to: mutations, also known as www.mpn10app.com. triple-negative, tend to have a shortened median survival of 3.2 years and are more prone to AML transformation. A JAK2 mutation is linked with an increased likelihood of blood clotting events (thrombosis).

New mutations that may influence the prognosis of MF are being discovered by researchers all the time, and are being added routinely to new prognostic scoring systems, but this is not yet part of standard practice.

Helpline freephone 08088 010 444 25 Living with MF

After a diagnosis of MF, you may want to make changes to may find that it affects you both your lifestyle to try to stay as well physically and emotionally. This as possible, after your diagnosis chapter will talk about both of and during treatment. Do not these aspects. try to change too much at once. Adopting a healthy way of living is Emotional impact of about making small, manageable MF changes to your lifestyle. Being told you have cancer can A healthy lifestyle includes having be very upsetting. Some of the a well-balanced diet and being symptoms of MF can be hard to physically active. With some cope with and, because of this, of your side effects, the idea of you may need emotional, as getting out and being active may well as practical, support. Being be the last thing you want to do, diagnosed with a rare disease can but it is important to try and stay affect the whole of you, not just as active as possible to make you your body, and it can impact you feel better and reduce some of emotionally at any point of your your symptoms or side effects. journey. It is likely that you will experience a range of complex One of the most commonly thoughts and emotions, some reported side effects of the of which may feel strange or treatment of MF is fatigue. This unfamiliar. It is important to know isn’t normal tiredness and doesn’t that these feelings are all valid improve with sleep. and a normal response to your Some general tips on how to deal illness. with fatigue include: "There was a total overwhelming • Have a regular lifestyle – try feeling of helplessness and being out going to bed and waking up at of control of my normal everyday life. approximately the same time But I had to carry on regardless for every day and try to avoid lying everyone else." in. Looking after you • Take part in regular, gentle Following a diagnosis of MF, you exercise to maintain your

26 www.leukaemiacare.org.uk fitness levels as much as living-well-withleukaemia/ possible. If you’re struggling to • Reserve your energy for what come to terms with your you find important and build diagnosis and prognosis, rest periods around those times. you can speak to us on • Before going to bed, avoid our helpline. Call us on stimulants such as alcohol, 08088 010 444. coffee, tea or chocolate, or using laptops, tablets or mobile phones. • Keep your bedroom quiet and at a comfortable temperature. • Talk about your worries with family, friends, your doctor or nurse, or patient support groups. • Discuss your fatigue with your doctor or nurse.

"Don’t get me wrong, hard living with a chronic condition. I get tired a lot and have to be careful about picking up infections, as my immune system is lower than others. But all in all, I will not let it take over my life. I don’t intend on fighting it; it will have to fight me."

You can find more information about living well with leukaemia at www.leukaemiacare.org. uk/support-and-information/ information-about-bloodcancer/

Helpline freephone 08088 010 444 27 Talking about MF

Talking to your • Be open when you discuss your symptoms and how you are haematologist coping. Good patient doctor MF is a rare condition. It is communication tends to important for you to develop a improve outcomes for patients good working relationship with your haematologist, so you are Other tips: given the best treatment possible • Bring someone else along to for you. your appointment – they can The following gives advice provide support, ask questions on working well with your and take notes if required haematologist: • Do not be afraid to ask for • If it is an initial consultation, a second opinion – most take along a list of your current haematologists are happy for medications and doses, and you to ask a list of any allergies you may You need to tell your have haematologist if... If you have a complicated • You’re having any medical medical history, take a list of treatment or taking any products diagnoses, previous procedures such as prescribed medicines, and/or complications over the counter treatments • Make a list of questions to take or vitamins. It is important to to your appointment. This will understand that treatments, help the discussion with your including complementary haematologist therapies, which are perfectly safe for most people, may not be safe if • It can be useful to repeat back you are being treated for MF. what you have heard so that you can be sure that you fully Remember, if you choose to start understood any form of complementary therapy outside of your medical • Note information down to help treatment, discuss this with you remember what was said your haematology consultant or

28 www.leukaemiacare.org.uk clinical nurse specialist, prior people misunderstand and, to beginning it. It is important unfortunately, it will mostly fall to understand the difference to you to educate them as best between complementary as you can. Where possible, it is therapies, used alongside advisable to let people know what standard treatment, and you find helpful and unhelpful, in alternative therapies, used terms of what others say and do. instead of standard treatment. Often people make assumptions There is no evidence that any form and do what they think helps. For of alternative therapy can treat example, saying you look well, MF. recounting stories of others they know with a similar diagnosis, Talking to other people encouraging you to look ahead Telling people you have a rare and stay positive is not always condition like MF can be hard to what people really want to hear. explain. You might find it useful to In many ways, the more you let your close family and friends, communicate with them the as well as your employer know better. about your health condition. It might be easier to provide people These points may help you: with basic information and give Explain that you have a them information leaflets about • condition that means your MF if they want to know more in- bone marrow does not function depth details. properly, and that this affects "I made a conscious decision to be the number of blood cells it very open about my illness. Telling produces family was tough. But I encouraged Explain your symptoms (maybe people to ask questions." • you are tired, or have a lot of It is probably best to focus pain) conversations on the symptoms Explain what you need (maybe that you are experiencing, how • more help day-to-day, or the condition affects you and someone to talk to) how you feel about it. Often

Helpline freephone 08088 010 444 29 Talking about ET (cont.)

You could also consider the as best they can. Talk as and following when telling people when you feel comfortable, so about your diagnosis: those around you will know when you need them most. • Find out more - Try to find out as much as you can about your condition from reliable internet sources, charitable organisations or your consultant haematologist. The more you know, the more you can share. • Have a print-out to hand - It may help to have some information to hand to share with family and friends. This will take the pressure off you having to remember everything they may want to know. • Explain your needs - Try and be clear about what your needs may be. Perhaps you need help with the weekly food shop, help with cooking dinner, or someone to drive you to and from appointments. You may find that friends and family are pleased that they can do something to help you. • Be open about how you feel - Do not be afraid of opening up about how you feel, as people who care will want to help you

30 www.leukaemiacare.org.uk Glossary

Acute Leukaemia blood cells contain haemoglobin and transport oxygen to body Leukaemia which progresses cells. This may be due to a lack rapidly and is generally of iron, leukaemia, or sickle cell aggressive. There are two types: disease. acute lymphoblastic leukaemia and acute myeloid leukaemia. Antibody Acute Lymphoblastic Large Y-shaped protein produced Leukaemia (ALL) by B-cell lymphocytes in response to a specific antigen, such as Leukaemia in which lymphocytes a bacteria, virus, or a foreign start multiplying uncontrollably in substance in the blood. The the bone marrow, resulting in high antibodies neutralise the bacteria numbers of abnormal, immature and viruses. lymphocytes. Antigen Acute Myeloid Leukaemia (AML) Toxin or other foreign substance which induces an immune Rapid and aggressive cancer response in the body, especially of the myeloid cells in the bone the production of antibodies. marrow. Blast Cells (Blasts) Allogeneic Stem Cell Transplant (Allo-SCT) Immature cells found in the bone marrow which are not Transplant of stem cells from a fully developed. Up to 5% of the matching donor. cells found in the bone marrow Amino Acids are blast cells. Patients with leukaemia have a much higher Organic molecules which are number of immature, abnormal the building blocks for making cells called blasts cells. proteins. Blood Cancer Anaemia Cancer of blood cells from the Condition where the number of bone marrow or lymphatic red blood cells are reduced. Red

Helpline freephone 08088 010 444 31 Glossary (cont.)

system. There are three main white blood cells, red blood cells types of blood cancer: and platelets. • Leukaemia begins in the bone Bone Marrow Aspirate marrow and is classified Bone marrow aspirates consist of according to the type of blood taking a sample of the liquid part cell it affects (either myeloid of the soft tissue bone marrow or lymphoid) and whether it inside your bones using a syringe. grows quickly (acute) or slowly They are crucial to establish a (chronic). diagnosis of leukaemia and may • Lymphoma starts in the be performed at stages during lymphocyte white blood cells treatment to monitor progress. within the lymphatic system. Bone Marrow Biopsy • Myeloma is a cancer of the Bone marrow biopsy involves plasma cells and starts in the the collection of a sample of bone marrow. Plasma cells are bone marrow from the hip bone, a type of white blood cell that generally under local anaesthesia. makes antibodies. A bone marrow surgical Blood Cells instrument with a cylindrical blade, called trephine, is used to Cells present in the blood and remove a one to two-centimetre bone marrow which include red core of bone marrow in one piece. blood cells, white blood cells and platelets. These three types of Bone Marrow Failure blood cell make up 45% of the Term used when the bone marrow blood volume, with the remaining is unable to keep up with the 55% being plasma, the liquid body’s need for white and red component of blood. blood cells and platelets. Bone Marrow Calreticulin (CALR) Soft blood-forming tissue that Soluble protein which is known fills the cavities of bones and to be involved in many body cell contains fat, immature and processes including regulation of mature blood cells, including calcium, cell adhesion and gene

32 www.leukaemiacare.org.uk expression. Mutations in CALR are from, and genetically identical, to common in ET and MF. a single common ancestor. Chemotherapy Complete remission Drugs that work in different ways Complete remission has occurred to stop the growth of cancer cells, when: either by killing the cells or by Blood cell counts have returned stopping them from dividing. • to normal Chromosomes • Less than 5% of abnormal, Thread-like structures which carry leukaemia cells are still present the genes, and are located in the in the bone marrow nuclei of every cell in the body. There are 46 chromosomes (23 Corticosteroids (Steroids) pairs) in humans. Hormones normally produced Clinical Trial by the adrenal glands which are two small glands found above Trial designed and planned to the kidneys. Corticosteroids determine a specific answer reduce inflammation (redness or aim; for example, whether and swelling) and the activity treatment A is better than of the immune system. They are treatment B. The study will be used for inflammatory conditions conducted in patients who meet such as asthma and eczema and particular inclusion criteria, and autoimmune diseases such as the results are collected and rheumatoid arthritis. analysed to provide an answer. Cytoplasm ClinicalTrials.gov Jelly-like fluid in a cell that houses ClinicalTrials.gov is a database all the constituents it requires for of trials and includes details of survival and reproduction approximately 276,190 research studies in 205 countries. Dendritic Cells Clonal Dendritic cells are white blood cells that capture toxins or other Refers to an organism descended foreign substances and present

Helpline freephone 08088 010 444 33 Glossary (cont.)

them to the T-cell lymphocytes for stores the genetic information destruction. A dendritic cell has a required to make human proteins. branched appearance resembling a tree, hence its name. Group of white blood cells, which DNA (Deoxyribonucleic Acid) have granular bodies in their Thread-like chain of amino acids cytoplasm. They include the found in the nucleus of each cell neutrophils, eosinophils and in the body which carries genetic white blood cells, instructions used in the growth, all of which protect the body development and functioning of from bacteria, allergens and the individual’s cells. inflammation. Eosinophil Haematology Type of white blood cell which Branch of medicine which studies has a protective immunity role the cause, prognosis, treatment, against parasites and allergens. and prevention of diseases related to blood. Essential Thrombocythaemia (ET) Haemoglobin Increased production in the Red protein contained within the bone marrow of the platelets by red blood cells and responsible for the megakaryocytes, which are transporting oxygen to the tissues the platelet-forming cells. The of the body. condition leads to abnormal blood clotting or bleeding. Immunotherapy Treatment that uses the body’s Fatigue own immune system to fight the Tiredness and weakness cancer. rendering the patient unable to Incidence work or perform usual activities. Number of new cases of disease Genes which can be reported as an Genes are made up of DNA which incidence rate or a risk.

34 www.leukaemiacare.org.uk Interferons infection or cancer. They are located mainly in the spleen but Naturally occurring body proteins also in the neck, armpit and groin. that send signals to interfere with the ability of viruses to multiply. Lymphocytes Irradiation Lymphocytes are a type of white blood cell that are vitally Particles or rays falling on to a important to the immune surface (radiation wave on the response. There are three types of surface of the skin). lymphocytes: B-cells, T-cells and JAK Gene natural killer (NK)-cells. B-cells produce antibodies that seek Janus Kinase gene which out invading organisms. T-cells manages signals from . destroy the organisms that have Lactate Dehydrogenase been labelled by the B-cells, as well as internal cells that have Enzyme that is required during become cancerous. NK-cells the process of turning glucose attack cancer cells and viruses. (sugar) into energy for the body cells. Lactate dehydrogenase is Lymphoid released during tissue damage, Relates to lymphocyte white blood and it is therefore a useful marker cells. for common injuries and disease such as heart failure or muscle Macrophage injury. Type of white blood cell that Lymph Nodes submerges and digests cellular debris, foreign substances, Components of the lymphatic microbes, cancer cells, and system (part of the body’s anything else that does not have immune system) that contain the type of proteins specific to lymphocytes which produce healthy body cells on its surface. antibodies and macrophage cells which digest dead cells. Lymph nodes are swollen with Large cell in the bone marrow cell fragments in the event of

Helpline freephone 08088 010 444 35 Glossary (cont.)

which produces the platelets in work normally. These blood cells the blood to prevent bleeding. include red blood cells which supply oxygen to the body’s tissues, white blood cells which White blood cell that attacks fight infection and platelets which invading organisms and helps help blood clot. combat infections. Myelofibrosis Mutation (Gene) Reactive and reversible process Permanent alteration in the DNA which occurs with many sequence of a gene, so that it cancerous and non-cancerous differs from what is found in most diseases of the bone marrow. people. Myeloid Myeloblasts or Myeloid Blasts Relates to bone marrow. Name given to blast cells in the myeloid cell line. These cells Myeloproliferative Neoplasms originate in the bone marrow and (MPNs) eventually become the following Disease of the bone marrow in white blood cells: neutrophils, which excess cells are produced. , macrophages, basophils, and eosinophils. Neoplasm Myeloid cells also give to the red Medical term for cancer, meaning blood cells and platelets. literally a new and abnormal growth of tissue anywhere in the Myelodysplastic Syndromes body. (MDS), also called Myelodysplasia Neutrophils Myelodysplastic disorders occur White blood cells involved in when the bone marrow does not fighting inflammation and make enough normal blood cells. infection specifically bacterial The blood cells made are not infections. fully developed and not able to

36 www.leukaemiacare.org.uk Philadelphia Chromosome, When the increased production also called Breakpoint Cluster is only of the red blood cells, the Region-Abelson Murine condition is erythrocytosis. Leukaemia Viral proto- Prognosis oncogene 1 (BCR-ABL1) Indication of how well a patient is Abnormal chromosome fusion expected to respond to treatment gene due to a swapping over based on their individual and fusion of sections of DNA characteristics at the time of between chromosomes 9 (ABL1) diagnosis or other timepoint in and 22 (BCR), resulting in a new the disease. fusion gene BCR-ABL1. This gene causes overproduction of myeloid Proliferation cells. It is found in all patients Rapid increase, for example in the with chronic myeloid leukaemia number of cells. and some patients with acute lymphoblastic leukaemia. Radiation Treatment Plasma Cell Cancer treatment that uses high doses of radiation to kill cancer Type of white blood cell that cells and shrink tumours. produces antibodies and is derived from B-cells. It is an ovoid Red Blood Cells (egg-shaped) cell with an off- Small blood cells that contain centre nucleus. haemoglobin and carry oxygen Platelets and other substances to all tissues of the body. One of the types of blood cells which help to stop bleeding. Spleen Polycythaemia Vera (PV) Largest organ of the lymphatic system whose function is to help Chronic increased production of clear the body of toxins, waste and red blood cells, white blood cells other unwanted materials. The and platelets in the bone marrow. spleen is located under the ribs

Helpline freephone 08088 010 444 37 Glossary (cont.)

on the left of the abdomen. standard of care for patients with slow growing blood cancers Splenectomy who do not have any symptoms. Removal of the spleen. Treatment is usually started either once symptoms appear Stem Cell or when test results suggest the Most basic cell in the body that blood cancer is progressing. has the ability to develop into any of the body’s specialised White Blood Cells cell types, from muscle cells to White blood cells are one of the brain cells. However, what makes types of cells found in the blood these stem cells reproduce and bone marrow, along with red uncontrollably, as in cancer, blood cells and platelets. White is thought to be linked to blood cells create an immune chromosome abnormalities. response against both infectious disease and foreign invaders. Stem Cell Transplant white blood cells Transplant of stem cells derived include the neutrophils (protect from part of the same individual against bacterial infections or a donor. and inflammation), eosinophils (protect against parasites and Targeted Therapy allergens) and basophils (create Drugs that specifically interrupt the inflammatory reactions the leukaemia cells from growing during an immune response). in the body. However, these drugs Other white blood cells include do not also harm the body’s the lymphocytes (recognise healthy cells the way conventional bacteria, viruses and toxins, to drugs do. which they produce antibodies) and monocytes (clear infection Watch and Wait products from the body). Management approach for slow growing blood cancers. Also called active monitoring, the Watch and Wait approach is the current

38 www.leukaemiacare.org.uk Useful contacts and further support

There are a number of helpful Blood Cancer UK sources to support you during Blood Cancer UK is the leading your diagnosis, treatment and charity into the research of blood beyond, including: cancers. They offer support to • Your haematologist and patients, their family and friends healthcare team through patient services. • Your family and friends 0808 2080 888 • Your psychologist (ask your www.bloodcancer.org.uk haematologist or CNS for a Cancer Research UK referral) Cancer Research UK is a leading Reliable online sources, • charity dedicated to cancer such as Leukaemia Care research. Charitable organisations • 0808 800 4040 There are a number of www.cancerresearchuk.org organisations, including ourselves, who provide expert Macmillan advice and information. Macmillan provides free practical, Leukaemia Care medical and financial support for people facing cancer. We are a charity dedicated to 0808 808 0000 supporting anyone affected by www.macmillan.org.uk the diagnosis of any blood cancer. We provide emotional support Maggie’s Centres through a range of support Maggie’s offers free practical, services including a helpline, emotional and social support patient and carer conferences, to people with cancer and their support group, informative families and friends. website, one-to-one buddy service and high-quality patient 0300 123 1801 information. We also have a nurse www.maggiescentres.org on our help line for any medical Citizens Advice Bureau (CAB) queries relating to your diagnosis. Offers advice on benefits and Helpline: 08088 010 444 financial assistance. www.leukaemiacare.org.uk [email protected] 08444 111 444 www.adviceguide.org.uk

Helpline freephone 08088 010 444 39 Leukaemia Care is a national charity dedicated to providing information, advice and support to anyone affected by a blood cancer.

Around 34,000 new cases of blood cancer are diagnosed in the UK each year. We are here to support you, whether you’re a patient, carer or family member.

Want to talk?

Helpline: 08088 010 444 (free from landlines and all major mobile networks) Office Line: 01905 755977 www.leukaemiacare.org.uk [email protected]

Leukaemia Care, One Birch Court, Blackpole East, Worcester, WR3 8SG

Leukaemia Care is registered as a charity in England and Wales (no.1183890) and Scotland (no. SCO49802). Company number: 11911752 (England and Wales). Registered office address: One Birch Court, Blackpole East, Worcester, WR3 8SG