Understanding Chronic Leukaemia. A guide for people with leukaemia, their families and friends.

Understanding Chronic Leukaemia A guide for people with leukaemia, their families and friends.

Understanding Chronic Leukaemia A guide for people with leukaemia, their families and friends. First published June 1997. Revised June 2006. The Cancer Council New South Wales 2005 ISBN 1 92104 121 3 Acknowledgements We thank the reviewers of this booklet: Professor David Ma, Department of Haematology and Stem Cell Transplantation, St Vincent s Hospital, Sydney and Faculty of Medicine, University of New South Wales; Alicia Cianflone, Clinical Nurse Consultant, Nepean Cancer Care Centre and John Stubbs, Cancer Voices NSW. Special thanks to Professor David Ma who was instrumental in updating and developing this booklet, and the other blood cancer booklets in the Understanding Cancer series. Editor: Jenny Mothoneos Cartoons: Greg Smith The Cancer Council New South Wales The Cancer Council is the leading cancer charity in New South Wales. It plays a unique and important role in the fight against cancer through undertaking high-quality research, advocating on cancer issues, providing information and services to the public and people with cancer, and raising funds for cancer programs. This booklet is funded through the generosity of the people of New South Wales. To make a donation to help defeat cancer, visit The Cancer Council s website at www.cancercouncil.com.au or phone 1300 780 113. Before commencing any health treatment, always consult your doctor. This booklet is intended as a general introduction to the topic and should not be seen as a substitute for your own doctor s or health professional s advice. All care is taken to ensure that the information contained here is accurate at the time of publication. The Cancer Council New South Wales 153 Dowling Street Woolloomooloo NSW 2011 Cancer Council Helpline: 13 11 20 Telephone: (02) 9334 1900 Facsimile: (02) 9334 1741 Email: feedback@nswcc.org.au Website: www.cancercouncil.com.au

Introduction This booklet has been written to help you understand more about chronic leukaemia. Many people feel understandably shocked and upset when they are told they have chronic leukaemia. This booklet is intended to help you understand the diagnosis and treatment of the disease. We also include information about support services. We cannot advise you about the best treatment for you. You need to discuss this with your doctors. However, we hope this booklet will answer some of your questions and help you think about questions you want to ask your doctors or other health carers. You may like to pass this booklet to your family and friends for their information. This booklet does not need to be read from cover to cover just read the parts that are useful to you. Some medical terms that may be unfamiliar are explained in the glossary. If you re reading this booklet for someone who doesn t understand English, tell them about the Cancer Council Helpline available in different languages (see page 34). Introduction 1

Contents The bone marrow... 4 The blood... 5 What is leukaemia?... 6 What is chronic leukaemia?... 6 Types of chronic leukaemia... 7 What is the cause?... 7 How common is it?... 8 What are the symptoms?... 8 Diagnosis... 10 Which health professionals will I see?... 10 Bone marrow biopsy... 11 Further tests... 12 Staging chronic leukaemia... 13 Prognosis... 14 Treatment... 15 Careful monitoring... 16 Chemotherapy... 16 Steroid therapy... 19 Purine analogue drugs... 19 Biological therapy... 20 Imatinib... 21 Peripheral blood stem cell or bone marrow transplantation... 21 Radiotherapy... 23 Removing the spleen... 24 Taking part in a clinical trial... 25 2 The Cancer Council New South Wales

Making treatment decisions... 26 Talking with doctors... 27 Talking with others... 27 A second opinion... 28 After treatment: follow-up... 28 Seeking support... 29 Practical and financial help... 30 Healthy eating and exercise... 31 Relaxation techniques... 31 Sexuality and leukaemia... 32 The Cancer Council Helpline... 34 Living with Cancer Education Program... 35 Cancer support groups... 35 The Leukaemia Foundation... 36 Caring for someone with leukaemia... 37 Information on the Internet... 37 Information checklist... 38 Glossary... 39 How you can help... 44 Regional offices... 45 Contents 3

The bone marrow The bone marrow is the soft spongy material in the centre of bones. The bone marrow makes early stage cells called stem cells, from which all other blood cells develop. There are two types of stem cells: Myeloid stem cells develop into three types of blood cells: red, white and platelets. Lymphoid stem cells develop into other types of white blood cells called T-lymphocytes and B-lymphocytes. When stem cells mature, they are released into the bloodstream. 4 The Cancer Council New South Wales

The blood Blood is pumped around your body to provide oxygen, nutrients, fight infections and remove waste products. The three main types of blood cells are carried along in a clear fluid called plasma. Red blood cells: Carry oxygen from your lungs to the rest of your body. If you don t have enough red cells, you may be pale and tire easily because your body is not getting enough oxygen. A shortage of red blood cells is called anaemia. White blood cells: Fight infections. If you do not have enough white cells, your risk of infection increases. Platelets: Help your blood clot and stop bleeding. If you do not have enough platelets, you may bruise for no known reason, have frequent nose bleeds or prolonged bleeding, or develop a rash of small dots to the arms, legs or body. The bone marrow 5

What is leukaemia? Leukaemia is a cancer of the white blood cells. There are several types of leukaemia and these are grouped in two ways: the type of white blood cell affected (myeloid or lymphocyte), and how quickly the disease develops and gets worse. Chronic: Leukaemia that appears gradually and develops slowly over months to years. Acute: Leukaemia that appears suddenly and grows quickly. The four main types of leukaemia are: chronic lymphocytic leukaemia chronic myeloid leukaemia acute lymphoblastic leukaemia acute myeloid leukaemia. Each type has its own characteristics and needs different treatment. What is chronic leukaemia? Chronic leukaemia develops when your white blood cells grow out of control. The abnormal white cells live too long, so there are too many circulating in the blood. These white cells are not fully developed and do not work properly. The bone marrow becomes crowded with abnormal white cells, leaving little room for healthy red cells and platelets to be produced. This booklet is about chronic lymphocytic leukaemia and chronic myeloid leukaemia. For information on acute leukaemia, call the Cancer Council helpline on 13 11 20 for a free copy of Understanding Acute Leukaemia. 6 The Cancer Council New South Wales

Types of chronic leukaemia There are two types of chronic leukaemia depending on what type of white blood cell is involved: chronic lymphocytic leukaemia (CLL) chronic myeloid leukaemia (CML). CLL affects the lymphocytes, which are a type of white blood cell. CLL is also sometimes known as chronic lymphatic leukaemia. CML affects the granulocytes. They are part of the myeloid family of white blood cells. What is the cause? The cause of CLL is not known but research is trying to find out why it develops. Most people diagnosed with CML have an abnormal chromosome called the Philadelphia chromosome (see page 12). Chromosomes contain genes, which are the full set of instructions for growth and development. CML, like other forms of leukaemia, does not run in families. CML has also been linked to exposure to high levels of radiation, such as being a survivor of an atomic bomb explosion. What is leukaemia? 7

How common is it? In 2003 in NSW, 44% of the 883 new cases of leukaemia were chronic leukaemia. CLL is more common among people over 60 years of age and is rare in people under 40. CML can occur at any age, but is more common after 60. It is rare in children. What are the symptoms? Many people with chronic leukaemia have no symptoms. The illness is difficult to detect in the early stages because the symptoms tend to be mild at first and get worse slowly. Symptoms of chronic leukaemia include: tiredness sweating weight loss lump in the left side of the stomach from an enlarged spleen swollen lymph glands bruising or bleeding from a low platelet count. Occasionally, a person will have none of these symptoms and the leukaemia is discovered during a routine blood test. 8 The Cancer Council New South Wales

Liver, spleen and lymph nodes Liver: the largest organ inside the body. The main roles of the liver include removing toxins, stabilising the body s sugar level and storing vitamins to be released into the blood as the body needs them. Spleen: an organ on the left side of your body under the ribs. It acts as a filter, removing old blood cells and storing blood for times when extra is needed. The spleen and lymph nodes also produce blood cells. Lymph nodes or glands: a network of small, bean-shaped structures. They are found throughout the body, including the neck, under the arm, chest, abdomen and groin. The lymph nodes filter out toxins and help protect the body from infections. What is leukaemia? 9

Diagnosis Which health professionals will I see? Your GP will arrange the initial blood test to check out your symptoms. If leukaemia is suspected, you will be referred to other health professionals, including: Haematologist: diagnoses and treats diseases of the bone marrow, blood and lymphatic system. Radiation oncologist: prescribes and co-ordinates the course of radiotherapy. Nurses: support and assist you through all stages of your treatment. Other health professionals that you may also see include: Dietitian: recommends the best eating plan to follow while you are in treatment and recovery. Social worker, physiotherapist and occupational therapist: link you to support services and help you to resume your normal activities. 10 The Cancer Council New South Wales

Bone marrow biopsy This test is usually done to confirm if leukaemia cells are present and to work out which leukaemia you have. Organise with a family member or friend to drive you home after the biopsy as the pain relief medication may make you feel drowsy. The bone marrow sample is examined for cell and chromosome changes, which in leukaemia cells are different to the normal cells. These changes also influence the type of treatment your doctor recommends for you. A thin needle is used to remove a small piece of bone and bone marrow fluid from the hipbone. A bone marrow biopsy is an uncomfortable procedure and can be painful. You will be given a local anaesthetic to numb the area. The procedure usually lasts up to 30 minutes. There are a wide range of pain relief medications available. Ask you doctor what is suitable for you before the biopsy. I remember squeezing my husband s hand when the needle went in. Having him there helped, as did the pain relief medication I was given. Diagnosis 11

Further tests Chromosome and molecular tests The Philadelphia chromosome carries an abnormal DNA code which instructs the leukaemia cells. This protein acts as a signal, telling the leukemic cells to grow and multiple. Lymph gland biopsy These tests are done on blood or bone marrow cells to look for changes in your chromosomes and their contents. This is very helpful for managing CML and CLL. Most people diagnosed with CML have an abnormal chromosome called the Philadelphia chromosome. Occasionally, to confirm the diagnosis in people with CLL, one enlarged lymph gland is removed. This is called a lymph gland biopsy. The gland is removed with a local or general anaesthetic and sent to the laboratory for testing. Most people go home the same day. After the biopsy, you will have a few stitches. CT scan Some people with chronic leukaemia may need a CT (computerised tomography) scan. This test uses x-ray beams to take pictures of the inside of your body. It can see if the lymph nodes are affected and if your spleen is enlarged. A CT scan takes about 30 minutes. Before the scan, a special dye may be injected into a vein, probably in your arm. This will make the pictures the scan takes clearer. For a few minutes, this may make you feel hot all over. You will lie flat on a table while the CT scanner, which is large and round like a doughnut, takes pictures. Most people are able to go home as soon as their scan is done. 12 The Cancer Council New South Wales

Staging chronic leukaemia The results of these tests will be used to see how far your leukaemia has spread. This is called staging. Your treatment will depend on the stage of your leukaemia. CLL and CML are staged in different ways. Staging CLL CLL usually develops slowly over 10 years or more. There are three stages. Early: High white blood cell count. No enlarged lymph nodes. Intermediate: High white blood cell count and enlarged lymph nodes. Late: Enlarged lymph glands and low red blood cell count or a low platelet count or both. In a small number of people, CLL can suddenly begin to develop more quickly. This is called transformation. The first sign of transformation may be worsening of your symptoms: high temperature, weight loss or sudden swelling of affected lymph nodes, especially in your abdomen. Diagnosis 13

Staging CML The staging of CML is described in three phases. Chronic: A few blast cells are found in the blood and bone marrow. This stage usually lasts a few years. Accelerated: After several years, the leukaemia may suddenly change and grow quicker. Symptoms include enlarged spleen, rising white cell count and high temperature. Blast: The number of blast cells increases, causing symptoms to worsen. Blast cells often spread to other organs. Prognosis Prognosis means the expected outcome of a disease. You need to discuss the prognosis of your chronic leukaemia with your doctor. Only someone who knows your medical condition can tell you what to expect and the treatment options that are best for you. CLL is not a curable disease but, for many people, treatment can control it for years and allow them to live a normal life. CML can be cured with bone marrow transplantation and possibly with newer drugs, such as The prognosis and treatment of CLL and CML are different. imatinib. Treatment becomes less effective as the disease progresses through the three phases. Relapse during the accelerated phase makes control more difficult. 14 The Cancer Council New South Wales

Treatment Although CLL and CML are similar diseases, they develop in different ways and respond to different treatments. Your treatment will depend on the type of chronic leukaemia you have, and how far the leukaemia has spread (stage or phase). Common treatment options Chronic lymphocytic leukaemia Careful monitoring Chemotherapy Purine analogues Steroids Biological therapy Peripheral blood stem cell or bone marrow transplantation Radiotherapy Removal of the spleen Chronic myeloid leukaemia Careful monitoring Imatinib Immunotherapy (such as interferon) Peripheral blood stem cell or bone marrow transplantation Chemotherapy Treatment 15

Careful monitoring Some chronic leukaemias grow slowly and cause few problems. Your doctor may recommend no treatment but keep an eye on the progress of the leukaemia with regular checkups and blood tests. People with CLL need no treatment if they have no enlarged lymph glands or rising number of white blood cells. See your doctor immediately if you develop viral or other infections such as shingles, which can occur in CLL. You ll be taught how to recognise the signs so you can get early treatment. Your doctor may recommend you have a yearly flu vaccination. Careful monitoring may also be recommended for CML. Chemotherapy Chemotherapy uses drugs to kill or slow the growth of leukaemia cells. These are called cytotoxic drugs. Chemotherapy mainly kills fast-growing cells such as leukaemia cells. Other fast-growing cells, such as the cells involved in hair growth and cells in the mouth, can also be affected. This can make your hair fall out or cause mouth ulcers. Most people with CLL are treated with chemotherapy tablets, which are usually taken for about seven days each month. The commonly used chemotherapy drugs are chlorambucil and cyclophosphamide. Some people may receive chemotherapy by injection into a vein (intravenously). People with CML may also have chemotherapy. The commonly used drug is hydroxyurea, which is taken by mouth. 16 The Cancer Council New South Wales

Side effects Some chemotherapy drugs can cause side effects. The side effects are temporary and there are ways to prevent or reduce them. Tell your doctor or nurse of any side effects you experience. They may prescribe a break or change in your treatment to make the side effects easier to handle. Increased risk of infections: Chemotherapy drugs lower white blood cells, which fight infection, so you may get more colds and flu, and scratches and cuts may get infected easily. Easy bruising or heavy bleeding from minor cuts or scrapes: Chemotherapy can also lower the number of platelets in your blood. You may need a transfusion of platelets before and during your treatment to replace the missing platelets. Tiredness: The level of red blood cells may drop causing you to feel tired and breathless. If your tiredness is caused by anaemia, you may be given a blood transfusion. Nausea: Some chemotherapy may make you feel sick or vomit. Anti-sickness drugs can prevent or greatly reduce nausea and vomiting. Sore mouth: Regular mouthwashes can help reduce the number of mouth sores. Hair loss: This will depend on the type of drugs you are taking. Hair loss is more common with some intravenous drugs. Ask your doctor what to expect. Infertility: This may be temporary or permanent (see page 33 for more information). For information on managing side effects, call the Cancer Council Helpline on 13 11 20 for a copy of Understanding Chemotherapy or download it from www.cancercouncil.com.au/cancerinformation/. Treatment 17

Taking care with infections Infections in people with chronic leukaemia need immediate attention. Contact your doctor or hospital urgently if any of these problems occur: fever over 38 C chills or constant shivering sweating, especially at night burning feeling when urinating severe cough or sore throat vomiting that lasts more than 24 hours unusual bleeding or bruising, such as nose bleeds, blood in your urine or black bowel motions. 18 The Cancer Council New South Wales

Steroid therapy Steroids are made naturally in the body. They can also be made artificially and used as drugs. In CLL, steroid therapy is sometimes given with chemotherapy. Side effects Side effects will vary depending on how long you have to take steroids. All side effects are temporary and will gradually disappear when you stop taking steroids. Steroids for CLL are usually given for a short time and in low doses, so they cause few side effects. If you get side effects, they can include having more of an appetite and feeling more energetic. You may also have difficulty sleeping or experience mood changes. Steroids taken for some time produce extra fluid in your body, and may cause swelling in your hands, fingers and feet. Purine analogue drugs Purine analogues are a group of drugs known as antimetabolites. They include fludarabine and cladribine. These drugs stop cells making and repairing DNA and RNA (the cell s genetic code). Cells need DNA and RNA to live and multiply. These drugs are usually given intravenously or under the skin. Fludarabine is commonly used in treatment of CLL and follicular lymphoma. Treatment 19

Biological therapy Biological therapy, which includes immunotherapy, uses materials made by the body s immune system or materials made in a laboratory to stimulate the body to fight infection. Immunotherapy for chronic leukaemia includes a protein called gamma interferon, which is made by the white blood cells. Another type of immunotherapy is antibodies. Antibodies work by finding and becoming attached to targeted cells such as lymphocytes and then destroying them. Monoclonal antibodies, which are made in the laboratory, can be given intravenously. The monoclonal antibody available in Australia and used to treat CLL is alemtuzumab (CamPath). Another biological therapy is called granulocyte-colony stimulating factor (G-CSF), which helps the white cells to recover faster after chemotherapy. It is given under the skin after chemotherapy. You may have the treatment on its own intravenously, or with chemotherapy. Side effects The side effects vary with the type of biological therapy you have but all are temporary. Flu-like symptoms, such as chills, fevers, muscle aches and tiredness are common, particularly with gamma interferon. Bone pain may occur with G-CSF injections. You may also Don t use aspirin or any other painkiller or medicine unless the doctor says you can. If your platelet count is low, aspirin can worsen the bleeding. Paracetamol is generally safe. bleed or bruise easily, or get a skin rash. Monoclonal antibodies may cause severe allergy and increase risk of infection. 20 The Cancer Council New South Wales

Imatinib Imatinib, also called Glivec, is used to treat CML. Imatinib blocks the action of a protein produced by the Philadelphia chromosome. The cancer cells cannot grow without this protein. This drug can bring on remission in chronic phase CML. Imatinib is less successful at treating the accelerated phase of CML because the cancer cells don t respond to the drug. Imatinib is taken as tablets. Most people get side effects but they are usually mild and can be managed. They include feeling sick, swelling of the face, especially around the eyes, diarrhoea, rash and low blood counts. Peripheral blood stem cell or bone marrow transplantation Bone marrow transplantation involves very high doses of chemotherapy. The chemotherapy will destroy the bone marrow but transplanted stem cells restore blood cell numbers to normal. Stem cells are early-stage cells from which other cells develop. They are found in the bone marrow. A very small number are also found in the blood (where they are called peripheral stem cells). There are two types of bone marrow transplantation: from another person (allogeneic transplant) your own (autologous transplant). If your own stem cells are used, you may be given a special drug to help the stem cells multiply quickly and be released into the blood. This is called granulocyte-colony stimulating factor (G-CSF). When enough stem cells have been made, they will be collected from a vein with a needle or small tube. Treatment 21

The stem cells are separated from the other blood cells by pumping the blood through a cell-separating device called an apheresis machine. They are then processed so that they can be frozen (cryopreserved). These stem cells can be stored for years. After the high-dose chemotherapy is given, your stem cells are thawed and returned to you. 22 The Cancer Council New South Wales

Side effects Peripheral blood stem cell or bone marrow transplantation is not suitable for everyone with chronic leukaemia because the high-dose chemotherapy has risks, such as infection and bleeding in the period before the transplanted stem cells have brought your blood cell level back to normal. Allogeneic transplants have other serious risks so many factors need to be considered before it is recommended, including your age and general health, the type of chronic leukaemia, how aggressive it is and how it responds to treatment. You will be watched closely by your doctors and nurses for any side effects. Talk to your transplant doctor or nurse at your treatment centre for more information. Bone marrow transplantation is not suitable for everyone. Ask your haematologist about the best treatment options for you. Radiotherapy Radiotherapy uses radiation, usually x-rays or gamma rays, to kill cancer cells or injure them so they cannot multiply. The x-rays are aimed at areas of chronic leukaemia cells using an external machine. This treatment may be considered if lymph glands have not shrunk after chemotherapy treatment. Treatment is carefully planned to destroy cancer cells with as little harm as possible to your normal tissues. You will lie under a machine, which takes x-ray pictures. Each treatment only takes a few minutes once started, but it can take between one and three hours to set up the machine, see the radiation oncologist and have blood tests. You will probably have treatment from Monday to Friday for several weeks. The length of treatment will depend on the size and type of cancer and on your general health. Treatment 23

Side effects Radiotherapy can cause side effects because of damage to tissues near the cancer. Fortunately, most side effects will go away in time and there are ways to reduce the discomfort they may cause. The most common side effects of radiotherapy are red skin like sunburn, tiredness and drowsiness. For more information call the Cancer Council Helpline on 13 11 20 for a copy of The Cancer Council s free booklet, Understanding Radiotherapy or download it from www.cancercouncil.com.au/cancerinformation/. Removing the spleen Chronic leukaemia may cause the spleen to become enlarged, causing discomfort and pain. An operation to remove the spleen is called a splenectomy. A splenectomy takes a couple of hours and requires a hospital stay of four to seven days. The spleen is part of the immune system and helps fight infection. Removing the spleen makes infections more likely. 24 The Cancer Council New South Wales

Taking part in a clinical trial Your doctor may suggest you consider taking part in a clinical trial. Clinical trials are a vital part of the search to find better treatments for cancer. Doctors conduct clinical trials to test new or modified treatments and see if they are better than current treatments. If your doctor asks you to take part in a clinical trial, make sure you understand the reasons for the trial and what it means for you. You may wish to ask your doctor: What treatments are being tested and why? What tests are involved? What are the possible risks or side effects? How long will the trial last? Will I need to go into hospital for treatment? What will I do if problems occur while I am in the trial? If you are unsure about joining the trial, ask for a second opinion from an independent specialist. If you decide to join a randomised clinical trial, you will be given either the best existing treatment or a promising new treatment. You will be chosen at random to receive one treatment or the other. You have the right to withdraw at any time from a trial. Doing so will not jeopardise your treatment for cancer. It is always your decision to take part in a clinical trial. If you do not want to take part, your doctor will discuss the best current treatment choices with you. For more information about clinical trials, call the Cancer Council Helpline on 13 11 20 for a free copy of Understanding Clinical Trials. Treatment 25

Making treatment decisions Sometimes it is difficult to decide on the right treatment for you. You may feel everything is happening so fast you don t have time to think things through. Waiting for test results and for treatment to begin can be difficult. While some people feel overwhelmed with information, others feel they don t have enough. If you are unclear about the information you have received, call the Cancer Council Helpline on 13 11 20 to discuss. Learning more about your illness, the treatment and side effects will help you make your own decisions speak to your doctor, get a second opinion, look at the recommended Internet sites on page 37, talk to your family and friends and to other people who have received these treatments. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it. If you are offered a choice of treatments, you will need to weigh the advantages and disadvantages of each treatment. If only one type of treatment is recommended, ask your doctor to explain why other treatment choices have not been offered. Some people with more advanced leukaemia will choose treatment, even if it only offers a small chance of cure. Others want to make sure the benefits of treatment outweigh any side effects. Still others will choose the treatment they consider offers them the best quality of life. Some may choose not to have treatment but to have symptoms managed to maintain the best possible quality of life. 26 The Cancer Council New South Wales

Talking with doctors When your doctor first tells you that you have leukaemia, it is obviously very stressful and you may not remember very much. It is often difficult to take everything in so you may want to see the doctor a few times before deciding on treatment. Your doctor may use medical terms you don t understand; it s ok to ask your doctor to explain again or you can check the meaning in the glossary at the end of this booklet. Before you see the doctor, it may help to write down your questions. A list of questions to ask your doctor is on page 38. Taking notes during the session or tape-recording the discussion can also help. Many people like to have a family member or friend go with them, to take part in the discussion, take notes or simply listen. Talking with others Once you have discussed treatment options with your doctor, you may want to talk them over with family or friends, with nursing staff, the hospital social worker or chaplain, your own religious If you talk to other people who have had chronic leukaemia, remember there are different types of chronic leukaemia and the best treatment for one person may not be the same for another. or spiritual adviser, a cancer support group (see page 35) or the Cancer Council Helpline. Talking it over can help sort out the right course of action for you. Making treatment decisions 27

A second opinion You may want to ask for a second opinion from another specialist. Some people feel uncomfortable asking their specialist for a second opinion, but specialists are used to patients doing this. A second opinion can be a valuable part of your decision-making process. Your specialist or family doctor can refer you to another specialist and you can ask for your results to be sent to the second-opinion doctor. You can ask for a second opinion even if you have already started treatment or still want to be treated by your first doctor. After treatment: follow-up After your treatment is over, you will need regular checkups with your doctor or your cancer treatment centre. Blood tests will be done to check your general health and to see if leukaemia cells have come back. Checkups will continue for several years but will become less frequent if you have no further problems. Between follow-up appointments, let your doctor know immediately of any health problems. Everyone expects that you will have your treatment and get on with life but it just doesn t happen like that. 28 The Cancer Council New South Wales

Seeking support When you are first diagnosed with leukaemia, it is normal to experience a range of emotions, such as fear, sadness, depression, anger or frustration. It may help to talk about your feelings with your partner, family members and friends or, if you prefer, with a hospital counsellor, social worker, psychologist, your religious or spiritual adviser, a support group, or call the Cancer Council Helpline. You may find that your friends and family don t know what to say to you. You may feel able to approach your friends directly and tell them what you need or you may prefer to ask a close family member or a friend to talk with other people for you. Some people may feel so uncomfortable that they avoid you. They may expect you to lead the way and tell them what you need. This can be difficult to handle and can make you feel lonely. The Cancer Council s booklet Emotions and Cancer may help at this critical time. Call 13 11 20 for a copy or download it from the Cancer Council s website at www.cancercouncil.com.au/. Seeking support 29

Practical and financial help A serious illness often causes practical and financial difficulties. You don t need to face these alone. Many services are available to help: Financial assistance, through benefits and pensions, can help pay for the cost of prescription medicines and for travel to medical appointments. Home nursing care is available through community nursing services, or through the local palliative care service. Meals on Wheels, home care services and safety aids and appliances can make life easier. To find out more contact the hospital social worker, clinical nurse coordinator, occupational therapist or physiotherapist, or the Cancer Council Helpline. It is really important to ask for help when you need it whether it be practical, financial or spiritual. 30 The Cancer Council New South Wales

Healthy eating and exercise Eating nutritious food will help you keep as well as possible and cope with the leukaemia and treatment side effects. Depending on the kind of treatment you have had, you may have special dietary needs. A dietitian can help to plan the best foods for your situation ones that you find tempting, easy to eat and nutritious. The Cancer Council Helpline can send you information on nutrition during and after cancer treatment. Call 13 11 20 for a free copy. You will probably find it helpful to stay active and to exercise regularly if you can. The amount and type of exercise will depend on what you are used to and how well you feel. Start by making small changes to your daily activities, such as walking to the shops or using the stairs instead of the lift or escalator. Even gardening can be beneficial. If you want to do more vigorous exercise, ask your doctor what is best for you. Relaxation techniques Some people find relaxation or meditation helps them feel better by releasing tension and anxiety. The hospital social worker or nurse will know whether the hospital runs any programs, or may know about local community programs. Your community health centre may also be able to help. The Look Good Feel Better program can help you deal with changes to your skin, hair and general appearance using cosmetics, wigs, turbans and scarves. Call 1800 650 960 for more information. Seeking support 31

Sexuality and leukaemia We are all sexual beings, and intimacy adds to the quality of our lives. Treatment and the psychological effects of leukaemia may affect you and your partner in different ways. Some people may withdraw because of feelings of being unable to cope with the effects of chemotherapy or other treatment on themselves or their partner. Others may feel an increased need for sexual and intimate contact for reassurance. Use a condom if you have sex on the days you have chemotherapy or the two days after chemotherapy. This is to protect your partner from any chemotherapy that may be in your body fluids. Communication is essential to deal with concerns or problems that may arise. Talk about your feelings with your partner. Try different positions and practices to find out what feels right and is satisfactory for both of you. If you have difficulties in continuing your usual sexual activities, discuss this with your doctor or with a trained counsellor. More information about sexuality for men and women is available. Call 13 11 20 for a copy of The Cancer Council s sexuality booklets. 32 The Cancer Council New South Wales

Fertility issues For women: If you are menstruating, you will be given drugs to stop your periods and any unnecessary blood loss while your platelet counts are low. Most chemotherapy given for acute leukaemia usually causes periods to stop completely (menopause). After menopause, women can t have children. The signs of menopause include a feeling of heat spreading to the chest, neck or face (hot flush), sweating, particularly at night, and dry skin. Talk to your doctor about medication for relieving the symptoms of menopause. Premature menopause (before age 40) may cause bones to become weaker and break more easily. This is called osteoporosis. For men: Chemotherapy drugs may lower the number of sperm produced and reduce their ability to move. This can cause infertility, which may be temporary or permanent. Men may have sperm stored before treatment starts for use at a later date. Ask your doctor about this. Contraception: Although chemotherapy reduces fertility, it is possible for some women to become pregnant while having chemotherapy and a man having chemotherapy could still make his partner pregnant. Pregnancy should be avoided during chemotherapy in case the drugs harm the unborn baby. Birth control (contraception) must be used. Ask your doctor about your contraceptive options. Talk to your doctor immediately if you or your partner becomes pregnant. Seeking support 33

The Cancer Council Helpline The Cancer Council Helpline is a service of The Cancer Council NSW. It is a telephone information and support service for people affected by cancer. It is a confidential service where you can talk about your concerns and needs with specialised oncology health professionals. They can send you written information and put you in touch with appropriate services in your own area. You can call the Cancer Council Helpline on 13 11 20, Monday to Friday, 9am to 5pm, for the cost of a local call. The tele-typewriter (TTY) number for deaf or hearingimpaired people is (02) 9334 1865. As well as English, the Helpline is offered in the following languages: Cantonese and Mandarin... 1300 300 935 Greek... 1300 301 449 Italian... 1300 301 431 Arabic... 1300 301 625 To access the Cancer Council Helpline in languages not on this list, call the Translating and Interpreting Service on 13 14 50. 34 The Cancer Council New South Wales

Living with Cancer Education Program If you want to find out more about cancer and how to cope with it, you may find the Cancer Council s Living with Cancer Education Program helpful. The program runs for about two hours a week over eight weeks. Groups are small, with plenty of time for discussion. Courses are held frequently at hospitals and community organisations throughout NSW. Cancer support groups Cancer support groups offer mutual support and information to people with cancer and their families. It can help to talk with others who have gone through the same experience. Support groups can also offer many practical suggestions and ways to cope. Your hospital may run a support group: check with your doctor, nurse or social worker. Joining a consumer advocacy group can also be a rewarding experience for some people. Call the Cancer Council Helpline on 13 11 20 for information on support or advocacy groups and telegroup counselling. Being able to talk with someone who has experienced cancer is the most marvellous feeling. With that person I can be completely honest with my feelings and fears. Seeking support 35

Caring for someone with leukaemia Looking after someone with leukaemia can be stressful. Try to look after yourself during this time. Give yourself some time out, and share your worries and concerns with someone outside. You may have to make many decisions. You will probably have to attend many appointments with doctors, support services and hospitals. Cancer support group membership is generally open to patients and carers. A support group can offer the chance to share experiences and ways of coping for all the family. No-one has to cope alone. Carers NSW offers support and information for carers. Call 1800 242 636 for more details. 36 The Cancer Council New South Wales

Information on the Internet The Internet can be a useful source of information, although not all websites are reliable. The websites listed below are good sources of reliable information. Several organisations provide information and support to people with blood cancers such as leukaemia, lymphoma and myeloma. See these websites for more details. Australian The Cancer Council NSW... www.cancercouncil.com.au The Cancer Council Australia... www.cancer.org.au Leukaemia Foundation of Australia... www.leukaemia.org.au Lymphoma Support & Research Association... www.lymphoma.org.au International American Cancer Society... www.cancer.org Arrow Bone Marrow Transplant Foundation... www.arrow.org.au CancerBACKUP... www.cancerbackup.org.uk Leukemia & Lymphoma Society of America... www.leukemia-lymphoma.org National Cancer Institute... www.cancer.gov/cancer_information Seeking support 37

Information checklist 1 What type of chronic leukaemia do I have? 2 What tests do I need? 3 What treatment do you recommend and why? 4 What are the risks and side effects of each treatment? 5 What side effects should I report? How long will the treatment last? 6 What happens if I do nothing? 7 Will the treatment affect my sex life and fertility? 8 What happens if the leukaemia comes back? 38 The Cancer Council New South Wales

Glossary This list explains some of the most common words you might hear. allogeneic transplantation A procedure in which a person receives stem cells from a compatible donor. anaemia A drop in the amount of red blood cells in your body. Anaemia decreases the amount of oxygen in the body and may cause tiredness and fatigue, breathlessness, paleness and a poor resistance to infection. autologous transplantation A procedure in which stem cells are removed, stored and then given back to the same person. biopsy The removal of a small amount of tissue from the body, for examination under a microscope, to diagnose a disease. blast cells Immature white blood cells. bone marrow The soft, spongy material found inside bones. Bone marrow contains stem cells that produce red blood cells, white blood cells and platelets. Glossary 39

bone marrow biopsy The removal of a small amount of bone marrow with a needle for examination under a microscope. bone marrow transplantation A procedure to replace bone marrow destroyed by high doses of chemotherapy treatment with healthy bone marrow. cells The building blocks of the body. A human is made of million of cells, which are adapted for different functions. Cells can reproduce themselves exactly, unless they are abnormal or damaged, as are cancer cells. chemotherapy The use of drugs, which kill or slow cell growth, to treat cancer. These drugs are called cytotoxic. chronic leukaemia A slow-growing leukaemia that starts in the bone marrow, and causes large numbers of white blood cells to be produced and enter the bloodstream. chronic lymphocytic leukaemia CLL. A slow-growing leukaemia in which too many immature white blood cells (called blast cells or lymphoblasts) are found in the blood and bone marrow. chronic myeloid leukaemia CML. A slow-growing leukaemia in which too many immature white blood cells of the myeloid family are found in the blood and bone marrow. 40 The Cancer Council New South Wales

granulocyte-colony stimulating factor (G-CSF) A protein that helps increase the number and function of certain white blood cells called neutrophils. These help fight infection in the bone marrow. haematologist A doctor who specialises in treating diseases of the blood. He or she also performs bone marrow or peripheral blood stem cell transplants. leukaemia A cancer of the white blood cells. lumbar puncture A test in which a needle is inserted into the base of your spine. It is used to collect fluid for testing and sometimes to inject drugs for treatment. lymphocyte A type of white blood cell that helps fight infection. myeloid One of the two groups of white blood cells. The myeloid group includes white blood cells, red blood cells and platelets. palliative treatment Treatment to relieve symptoms without trying to cure the disease. Philadelphia chromosome An abnormal chromosome associated with CML. It carries instructions for the body to produce a particular protein, which makes too many white blood cells. Glossary 41

plasma The clear fluid part of the blood that carries blood cells. platelets One of three types of cells found in the blood. These help the blood to clot and stop bleeding. prognosis The likely outcome of a person s disease. radiotherapy The use of radiation, usually x-rays or gamma rays, to kill cancer cells or injure them so they cannot grow and multiply. red blood cells Also called erythrocytes. One of three types of cells found in the blood. They carry oxygen around the body. relapse The return of a disease after a period of improvement. remission Period of time when the symptoms of the cancer reduce or disappear. A partial remission is when there has been a significant improvement in the cancer. A complete remission is when there is no evidence of active disease. This does not necessarily mean that the cancer is cured. side effect Unintended effects of a drug or treatment. 42 The Cancer Council New South Wales

spleen An organ located on the left side of the abdomen under your ribs. It is part of the lymphatic system. The spleen produces lymphocytes, filters the blood, stores blood cells, and destroys old blood cells. stem cells Early-stage blood cells from which other cells develop. Stem cells are found in the bone marrow. tissue A collection of cells that make up each piece (or organ) of the body. white blood cells Also called leucocytes. One of three types of cells found in the blood. They help the body fight infection. Glossary 43

How you can help The Cancer Council NSW is dedicated to defeating cancer and we need your help. Please: Join a Cancer Council event: Join one of our community fundraising events like Daffodil Day, Australia s Biggest Morning Tea, Relay For Life, Girls Night In, Pink Ribbon Day or hold your own fundraiser. Make a donation: Any donation whether large or small will make a meaningful contribution to our fight to defeat cancer or join our Breakthrough Appeal by making a regular donation. Leave a gift in your will: Bequests are our most important source of funding. Leaving money in your will is an easy, effective and personal way of contributing to the cancer cause. Buy your sun protection goods online or from one of our retail stores: Every purchase contributes to our work. Become a volunteer: The work of volunteers is absolutely vital to the Cancer Council and there are many ways you can help. Help us speak out: The Cancer Council is a leading advocate for cancer prevention and improved patient services. You can help us speak out on important cancer issues. Help us create cancer smart communities: You can help us defeat cancer by living and promoting a cancer smart lifestyle. To find out more about how you can help please call 1300 780 113. We thank you for your support. Together, we can defeat cancer. 44 The Cancer Council New South Wales

Regional offices Central Coast Region 127 Erina Street Gosford NSW 2250 Ph: (02) 4325 5444 Fax: (02) 4325 5688 Far North Coast Region 120 Tamar Street Ballina NSW 2478 Ph: (02) 6681 1933 Fax: (02) 6681 1936 Hunter Region 22 Lambton Road Broadmeadow NSW 2292 Ph: (02) 4961 0988 Fax: (02) 4961 0955 Mid North Coast Region 121 High Street Coffs Harbour NSW 2450 Ph: (02) 6651 5732 Fax: (02) 6652 1530 North West Region Shop 2 218 Peel Street Tamworth NSW 2340 Ph: (02) 6766 1164 Fax: (02) 6766 7053 South West Region 40 Morrow Street Wagga Wagga NSW 2650 Ph: (02) 6921 7760 Fax: (02) 6921 3680 Southern Region 1 Lowden Square Wollongong NSW 2500 Ph: (02) 4225 3660 Fax: (02) 4225 1700 Sydney Metropolitan Region and Head Office 153 Dowling Street Woolloomooloo NSW 2011 (PO Box 572 Kings Cross NSW 1340) Ph: (02) 9334 1900 Fax: (02) 9334 1739 Western Sydney Region 43 Hunter Street Parramatta NSW 2150 Ph: (02) 9687 1399 Fax: (02) 9687 1118 Western Region 84 Byng Street Orange NSW 2800 Ph: (02) 6361 1333 Fax: (02) 6361 1863 Regional offices 45

Cancer Council Helpline 13 11 20 For support and information on cancer and cancer-related issues, call the Cancer Council Helpline. This is a free and confidential service. Cancer Council Helpline... 13 11 20 (cost of a local call) TTY... (02) 9334 1865 for deaf and hearing-impaired Cantonese and Mandarin... 1300 300 935 Greek... 1300 301 449 Italian... 1300 301 431 Arabic... 1300 301 625 For further information and details please visit our website: www.cancercouncil.com.au CAN722 Date: 06/06