Ca ring for people wi th ca ncer. Understa nding. c h ronic l y m p h o c y t i c l e u k a e m i a

Transcription

1 Ca ring for people wi th ca ncer Understa nding c h ronic l y m p h o c y t i c l e u k a e m i a

2 Understa nding chronic lymphocytic leukaemia This booklet has been written to help you understand more about chronic lymphocytic leukaemia (CLL). It has been prepared and checked by doctors, other relevant specialists, nurses and patients. The information in this booklet is an agreed view on CLL, how it is diagnosed, treated and how treatment may affect you. If you are a patient, your doctor or nurse may go through the booklet with you and mark sections that are important for you. You can also make a note below of the contact names and information that you may need quickly. Specialist. nurse/contact names Family doctor Hospital Surgery address Tel Emergency Tel Treatments Tel Review dates The publication of this booklet is supported by a grant from Schering AG. If you like, you can also add: Your name Address

3 Irish Cancer Society, 43/45 Northumberland Road, Dublin 4 Tel: Fax: info@irishcancer.ie Website: The Irish Cancer Society is the national charity for cancer care, dedicated to eliminating cancer as a major health problem and to improving the lives of those living with cancer. This booklet has been produced by the Nursing Services Unit of the Irish Cancer Society to meet the need for improved communication, information and support for cancer patients and their families throughout diagnosis and treatment. We would like to thank all those patients, families and professionals whose support and advice made this publication possible. E D I T O R Antoinette Walker H E A L T H C A R E A D V I S E R S Dr Elisabeth Vandenberghe, Consultant Haematologist Dr Gerard Crotty, Consultant Haematologist Siobhán McGuckin, Clinical Nurse Specialist in Haematology Melanie Strickland, Clinical Nurse Manager S E R I E S E D I T O R Joan Kelly, Nursing Services Manager I L L U S T R A T O R Michael H. Phillips Published in Ireland by the Irish Cancer Society. Irish Cancer Society 2006 Next revise: 2008 All rights reserved. No part of this publication may be reproduced or transmitted, in any form or by any means, electronic or mechanical, including photocopying, recording or any information storage and retrieval system, without permission in writing from the Irish Cancer Society. ISBN Contents 4 Introduction 5 What does that word mean? Before treatment 7 What is leukaemia? 9 What is chronic lymphocytic leukaemia (CLL)? 9 What causes CLL? 10 What are the symptoms of CLL? 10 How is CLL diagnosed? 15 Staging of CLL Treatment and side-effects 17 Types of treatment 20 Chemotherapy 22 Steroid therapy 22 Biological therapy 24 Combination therapy 25 High-dose therapy and stem cell transplantation 28 Treatment of symptoms 29 What side-effects can I expect? 41 Will treatment affect my sex life and fertility? 45 What to do when off treatment 47 Research what is a clinical trial? 48 Complementary and alternative therapies Coping and emotions 51 How to cope with your feelings 55 Coping with your family 56 Caring for someone with CLL 59 Who else can help? Support resources 61 Health cover 69 Irish Cancer Society services 72 Useful organisations/helpful books 77 Frequently asked questions 78 Your own questions 3

4 4 Understanding chronic lymphocytic leukaemia Introduction This booklet has been written to help you understand more about chronic lymphocytic leukaemia (CLL). We hope it answers some questions you may have about its symptoms and diagnosis, how it is treated, and how to cope with any side-effects that may occur. The treatment for CLL can vary a little between doctors and hospitals. As a result, you may have questions and concerns about your own treatment which this booklet does not answer. It is best to discuss details of your own treatment with your doctor. At the back of the booklet you will also find lists of useful organisations, books and websites. Reading this booklet Read the sections of this booklet that are of interest to you only. Some of the information may not be relevant to your situation. You may find that there is a lot of information to take in and that it can be hard to concentrate, especially if you are feeling anxious or worried. Remember that you do not need to know everything about CLL straight away. Read a section and when you feel relaxed and want to know more, read another section. If you do not understand something that has been written, discuss it with your doctor or nurse. You can also call the National Cancer Helpline If you have found the booklet helpful, you could pass it on to your family and friends too. The more they know about your illness, the more they can help when you need them most. Understanding chronic lymphocytic leukaemia 5 What does that word mean? Anti-emetic Biological therapy Bone marrow A tablet, injection or suppository given to stop you feeling sick or vomiting. A treatment that uses the body s immune system to fight cancer. It can also reduce side-effects caused by some cancer treatments. Soft spongy material found in large bones that produces three types of blood cells: red blood cells, white blood cells and platelets. Bone marrow transplant A treatment where you receive high doses (allogeneic) of chemotherapy to kill off all the blood cells and leukaemia cells in your bone marrow. You then receive bone marrow donated from a suitable donor, so that you are able to produce new healthy blood cells. Chemotherapy Haematologist Haematology Immunoglobulins Leukaemia Lymphocytes Lymphoid A treatment to cure or control cancer with drugs. A doctor who specialises in treating patients with abnormal blood or bone marrow. The study of blood and bone marrow. Proteins produced by white blood cells to help protect the body from infection and disease. Also called antibodies. Cancer of the white blood cells. A type of mature white blood cell that helps to fight infection. One of two families of white blood cells. The other family is myeloid cells. Lymphoid cells mature into lymphocytes.

5 6 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 7 Lymphoma Monoclonal antibodies Nausea Neutropenia Platelets Prolymphocytic leukaemia (PLL) Radiotherapy Red blood cell Richter s syndrome A cancer of the lymph system. A treatment where you receive special proteins. They attach themselves to proteins on the surface of the abnormal white blood cells and cause the cells to die. Feeling sick or wanting to be sick. A reduced number of white cells called neutrophils. It can put you at risk of sudden infections. Blood cells responsible for clotting. A type of leukaemia similar to CLL but less common and often more aggressive. CLL can change into a similar condition to PLL. A treatment for cancer and other diseases using high-energy rays. Blood cells that carry oxygen to every cell in your body. A type of lymphoma that CLL can change into suddenly. Stem cell transplantation A treatment where you receive high (allogeneic) doses of chemotherapy to kill off all the blood cells and leukaemia cells in your bone marrow. You then receive stem cells donated from a suitable donor, which are able to produce new healthy blood cells in your bone marrow. Transformation White blood cell When one type of leukaemia changes into another type of leukaemia or lymphoma. Blood cells responsible for fighting infection. Before treatment What is leukaemia? Leukaemia is a cancer of white blood cells. Leukaemia is a cancer of white blood cells. This occurs in the bone marrow where all your blood cells are made. Sometimes young white blood cells grow rapidly but do not mature properly. Other times old white blood cells do not die off naturally. These young or old abnormal cells build up in the bone marrow and prevent normal blood cells from growing. Bone marrow Hard, compact bone Bone marrow All the various types of cells in the blood are made by the bone marrow. Bone marrow is the spongy tissue that fills your bones. The most basic cells found in your bone marrow are called stem cells. These cells mature into white blood cells, red blood cells or platelets. White blood cells are involved in fighting infection. Red blood cells carry oxygen to all the tissues in your body. Platelets are involved in blood clotting. Once made, these blood cells leave your bone marrow and enter your bloodstream. Normally, they are replaced by the bone marrow as needed and the process is controlled. In leukaemia this control is lost.

6 8 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 9 To sum up Types of leukaemia Stem cells in the bone marrow produce two families of cells. These are called myeloid cells and lymphoid cells. Myeloid cells are made up of red blood cells, platelets and some white blood cells. The type of white cells can be monocytes or granulocytes, including neutrophils. Lymphoid cells contain all the other types of white blood cells and are called lymphocytes. Both cells fight infection in different ways. Myeloid cells are the body s quick defence against general infection. Lymphoid cells, on the other hand, develop slowly. But they are more specific and build up your immunity to certain types of infection. This leads to four main types of leukaemia: Acute lymphoblastic Chronic lymphocytic leukaemia (ALL) leukaemia (CLL) Acute myeloblastic leukaemia (AML) The types of leukaemia describe the nature of the disease. It can be either acute or chronic and the type of cell involved can be either myeloid or lymphoid. Acute is when the cells are early in their life stage and the leukaemia develops quickly. Chronic is when cells are older and the disease progresses slowly. Each type of leukaemia has its own features and treatment. For free booklets on each type of leukaemia, contact the National Cancer Helpline Leukaemia is a cancer of the white blood cells. Leukaemia cells can either grow rapidly (acute) or fail to die naturally (chronic). There are four main types of leukaemia. Chronic myeloid leukaemia (CML). What is chronic lymphocytic leukaemia (CLL)? Chronic lymphocytic leukaemia (CLL) is a cancer of the lymphoid cells (lymphocytes). CLL used to be known as chronic CLL is a lymphatic leukaemia. Normally lymphocytes die off naturally cancer of the at the end of their life span. However, with CLL these cells lymphocytes. live on even when they are no longer useful in fighting infection. They may build up in the bone marrow until there is no room for normal blood cells to develop. This causes problems with fighting infection, carrying oxygen and blood clotting. What causes CLL? CLL is the most common leukaemia in the western world. The chances of developing it tend to increase with age. Generally people are over 50, with most over 65, when first diagnosed. It rarely occurs in people under the age of 30 and does not affect children. Usually more men than women are diagnosed. CLL is more common in white populations but rare in Asian populations. It can also occur among close relatives of someone diagnosed with CLL, e.g. a brother or first cousin. However, it is not infectious and cannot be passed on to family members and friends. The cause of CLL is unknown. There is no evidence that exposure to chemicals, radiation, smoking, diet or viral infections causes C L L. Sometimes people who have chronic inflammatory conditions, e.g. rheumatoid arthritis or Crohn s disease, also develop CLL. But there is no proven link between the two at present.

7 10 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 11 What are the symptoms of CLL? In the early stages of CLL there are no symptoms. In fact you may have the disease for many years before you develop any problems at all. Most cases of CLL are picked up on a routine blood test when you have no symptoms at all. Or else you many have vague symptoms such as fatigue which is common to many other conditions. The most common signs and symptoms of CLL include: Tiredness, weakness or fatigue Shortness of breath Anaemia Loss of appetite and weight loss Enlarged lymph glands in the neck, armpits or groin Enlarged liver or spleen Night sweats How is CLL diagnosed? Discomfort in the abdomen Bruising or bleeding problems Repeated infections, especially shingles Fever Bone pain. If your GP suspects that you have any symptoms of CLL or if a routine blood test is abnormal, he or she will refer you to a Leukaemia haematologist. This is a doctor who specialises in treating can only be blood and bone marrow disorders. The haematologist will confirmed by arrange for you to have a series of tests at the hospital. a blood test. Leukaemia can only be confirmed by a blood test. Before treatment can be given, your haematologist will ask you about your medical history. A full physical exam to check your general state of health will also be done. The haematologist will also check for any signs of leukaemia, such as swollen glands or anything that seems unusual. You will then need further tests to find out the type of leukaemia you have. The tests will include: Full blood count A full blood count (FBC) will be taken. This measures the number of white blood cells, including the types of lymphocytes that are increased in CLL. It also counts the number of red blood cells and platelets in your blood. The test can also give your haematologist an idea of your general health. Other blood tests Your blood will also be examined under a microscope to identify the leukaemia cells. Sometimes the size and shape of these cells can be seen. A diagnosis of CLL can then be confirmed. If the number of lymphocytes is not high, your haematologist may wait for the results of immunophenotyping before being sure of the diagnosis. Immunophenotyping Immunophenotyping is a test where your blood or bone marrow is examined to see what kind of antigens (proteins) are on the cell surface. This can help the haematologist to find out what type of leukaemia you have and how it is going to behave in the future. Bone marrow biopsy or aspirate Nowadays a bone marrow biopsy or aspirate is only done if the haematologist does not get enough information from your blood tests, especially immunophenotyping. The test involves examining Cancer Helpline Ê

8 12 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 13 a tiny sample of your bone or bone marrow under a microscope. If a sample of bone marrow cells is taken it is called an aspirate. If a tiny piece of bone is taken it is a trephine biopsy. Both can be done at the same time. Usually the sample is taken from your hip bone. Before the test you will be given a local anaesthetic to numb the area. A needle is then passed gently through your skin into the bone marrow. A tiny sample of the bone marrow or bone is then drawn off using a syringe. Bone marrow looks like a red liquid similar to blood. A small plaster will then cover the area where the bone marrow or bone has been taken. It takes about 15 minutes in all and you will feel a little discomfort for a few days. But you will be given painkillers for any discomfort you may have. In the laboratory, your A bone marrow biopsy/aspirate haematologist will look at the cells from the bone marrow aspirate or biopsy. This is to check if there is any abnormal increase in the number of lymphocytes. Other tests you may need There are many special tests that can give your haematologist more information about the extent of your CLL. These include: Chest X-ray: This is done to check for any enlarged lymph glands or chest infections. Lymph gland biopsy: This test is rarely needed. If your glands are enlarged, a biopsy or sample of the tissue may be done. It involves a small operation usually under local anaesthetic. The gland is removed and then sent to the laboratory for tests. Chromosomes studies (cytogenetics): Chromosomes contain the genetic information of your cells. Chromosome tests may be done on your blood, lymph glands and bone marrow samples. These are special tests that can check for known abnormal changes of the chromosomes that occur in CLL. CT scan: A CT scan is a type of X-ray that takes pictures of your body from different angles. The X-ray machine, which is doughnutshaped, is linked to a computer which can create a detailed picture of your tissues and organs. In most cases a dye can be injected into a vein in your arm which shows up your organs better. Your haematologist may want you to have a CT because it can show the presence or absence of lymph glands. A CT scan

9 14 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 15 Ultrasound scan: This test uses sound waves to create a picture of any part of your body. It may be done to check for any enlarged lymph glands or spleen. Waiting for results The type of treatment you will be given will depend on the results of your tests. It may take a while to get all the test results. Talk to your doctor or nurse if you are concerned and anxious during this time. You could share your fears and worries with your partner or friends too. You can also call the National Cancer Helpline if you would like to discuss any information on CLL or to talk about your concerns. Staging of CLL Once all your test results are ready, your haematologist will stage your CLL. Staging means getting an overall picture of your illness and the level of disease. At present the Binet system is often used to stage CLL. It measures the number of white blood cells in your blood and if your glands are enlarged, especially in the neck, armpits, groin, liver or spleen. If you would like more details about your stage of CLL, talk to your doctor or nurse. Stage A Low level High number of white blood cells. Less than 3 enlarged lymph glands. Stage B Medium level High number of white blood cells. Three or more enlarged lymph glands. Spleen or liver may be enlarged. Stage C High level High number of white blood cells. Anaemia and/or low platelets. There may be 3 or more enlarged lymph glands. Spleen or liver may be enlarged. Types of CLL Usually chronic leukaemias develop slowly. About one-third of patients with CLL have a form that grows so slowly that no treatment is required. As a result, your haematologist may decide to take regular blood samples from you and watch and wait instead. Not everyone with stage A will go on to develop stage B or stage C. Various tests such as cytogenetics, immunophenotyping and IgVH gene mutation status can be done to check how slow growing your CLL is. Cancer Helpline Ê

10 16 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 17 Generally, if you have stage A you may not need any treatment. Stages B and C will need to be treated. CLL related diseases Some types of CLL can develop quickly. A very small number of patients can later develop other diseases related to CLL. When a leukaemia changes from one type into another it is called transformation. A sudden increase of symptoms, e.g. fever, weight loss or swollen glands, is linked to transformation. CLL can change to prolymphocytic leukaemia (PLL) or a rare type of lymphoma called Richter s syndrome. Treatment and side-effects Types of treatment Remission is when no abnormal white cells can be found in your blood or bone marrow. The aim of treatment is to stop the bone marrow producing abnormal white blood cells. When this happens it is called remission and symptoms like tiredness and swollen glands disappear. If CLL returns it is called a relapse. CLL is rarely cured by current therapy apart from a few patients who have had allogeneic transplants. Even so, people can live with the disease for some years. To sum up CLL is a cancer of the lymphocytes. The cause of CLL is unknown. Symptoms of CLL include fatigue, night sweats, anaemia, infection and bleeding. CLL is diagnosed by blood tests and sometimes bone marrow tests. In general there are a number of ways to treat CLL: Active monitoring Chemotherapy Steroid therapy Biological therapy Combination therapy High-dose therapy and stem cell transplantation Treatment of symptoms. How does my doctor plan my treatment? The treatment you receive will depend on the stage of your CLL, your age and your general health. Your haematologist will take your own wishes and preferences into account too. Remember to ask as many questions as you can about your CLL. The more informed you are about it, the better you can make a decision about your treatment. You may be diagnosed with CLL but show few signs of active disease. In this case your doctor may decide not to treat you as there may be little or no benefit to treatment at this stage. With active monitoring you visit your doctor and have blood tests every

11 18 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 19 few months. Basically you watch and wait to see if CLL develops further. It may take years for the disease to become active. If your CLL is active, your doctor may decide to treat you using chemotherapy. This is the most common way of treating CLL. It involves the use of toxic drugs that kill the white blood cells. Chemotherapy may be given on its own or in combination with steroids or other drugs. Biological therapy can also be used with chemotherapy or if chemotherapy is no longer working. These drugs use the body s immune system to fight cancer and are known as monoclonal antibodies. When chemotherapy, steroids or biological therapy are used together it is called combination therapy. In a small number of cases your doctor may decide to do a stem cell transplant (or a bone marrow transplant). This is an intensive treatment and not suitable for everyone. It involves receiving high doses of chemotherapy to kill off all the blood cells in your bone marrow both abnormal and normal cells. By means of a transfusion you receive stem cells donated from a suitable relative. These donated stem cells are then able to produce new healthy blood cells in your bone marrow. Some of your symptoms of CLL may need to be treated straight away. This includes any infection, bleeding or anaemia. This is called supportive therapy. Sometimes radiotherapy is given if your spleen is affected. On rare occasions you may need surgery too. The spleen may need to be removed if it is enlarged and causing bleeding problems. Talk to your partner and friends about your treatment plan and any worries you may have. However, if you are unhappy with the treatment plan, you are free to get a second medical opinion. This may reassure you of the treatment choices. Giving consent for treatment Before you start any treatment, your doctor will explain the aims of the treatment to you. You may be asked to sign a consent form saying that you give permission for treatment to be given. In some cases you may give verbal permission. No medical treatment will be given without your consent. Before treatment, you should have been given full information about: The type and amount of treatment you will have The advantages and disadvantages of the treatment Any major risks or side-effects of the treatment Any other treatments that may be available. If you do not understand what you have been told, let your doctor or nurse know straight away. They can explain it to you again. Some CLL treatments are complex, so it is not unusual for people to need repeated explanations. Sometimes you may feel that your doctor or nurse is too busy to answer your questions. It is important that you know how the treatment is likely to affect you. Also, your doctor or nurse should make time for you to ask questions. You can always ask for more time to decide about the treatment, if you are unsure when it is first explained to you. You are also free to choose not to have the treatment. But first you should let your doctor or nurse know your concerns.

12 20 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 21 Chemotherapy The main treatment for CLL is chemotherapy. This is the use of drugs to kill or control the leukaemia cells. Because it Chemotherapy cannot tell the difference between leukaemia cells and is the main normal cells it may cause unwanted side-effects. The main treatment for one is the risk of infection. Normal cells recover quickly so CLL. the majority of these side-effects do not last long. For this reason, chemotherapy is given in cycles. It allows time for the normal cells to recover. Most chemotherapy for CLL is given as tablets. How is chemotherapy given? Chemotherapy drugs can be given as tablets or capsules or injected into a vein (intravenously). Most drugs given for CLL can be taken as tablets. If you are receiving intravenous chemotherapy, a fine tube is put into a vein in your arm or on the back of your hand. The chemotherapy is then able to travel to all parts of your body, except the brain. Chemotherapy into a vein How much chemotherapy do I need? Chemotherapy can be given in the day ward of the hospital or as an inpatient for a few days. Most chemotherapy tablets can be taken at home. Before chemotherapy begins, you may be given a tablet called allopurinol to help your kidneys get rid of uric acid. Uric acid may build up in your body when a large number of leukaemia cells are killed by chemotherapy. It can lead to gout and kidney stones. Allupurinol is usually given for up to 3 weeks. The most commonly used drugs to treat CLL are cyclophosphamide, chlorambucil, steroids and fludarabine. Usually chlorambucil is taken for about 7 days every 4 weeks. Fludarabine is taken orally or into a vein once a day for 5 days every 4 weeks. Drugs can be given on their own but in most cases are given in combination with other drugs. Your doctor may decide to combine your drugs with oral steroids too, e.g. prednisolone. Each 4 weeks counts as 1 cycle of treatment. You may receive between 6 and 8 cycles of chemotherapy. The entire course of chemotherapy usually lasts several months. After about 3 cycles your doctor should have a good idea if you are responding to the drugs or not. During this time you will have regular blood tests to check the effects of the drugs. A bone marrow biopsy and CT scan of your lymph glands may be done as well. Depending on the results of your tests, sometimes the drug or dosage may need to be changed. You may experience some nausea and vomiting when taking chemotherapy. But many of the side-effects are well controlled nowadays. The level of your normal white blood cells may drop as well. This means that you are more prone to infections than

13 22 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 23 before. If the number of your white blood cells is quite low, growth factors may be given. Or you may be given immunoglobulins into your vein every month. If you receive fludarabine, you may be given antibiotics after treatment until your lymphocyte count is back to normal. See page 30 for more details on growth factors and page 29 for more about the side-effects of chemotherapy. Steroid therapy Doctors often prescribe steroids, e.g. prednisolone, when treating CLL. Steroids are not a cure for CLL but they can help to control it when used with other treatments. Not only can steroids help to treat the disease but also the symptoms of CLL such as anaemia and fatigue. The effects of taking steroids may become noticeable after a short while. You may find that your appetite increases and that you have more energy. However, you may have problems getting to sleep and be more at risk of getting infections, high blood pressure or diabetes. For more about the side-effects of steroids see page 39. Biological therapy Biological therapy uses the body s immune system to fight cancer or leukaemia. It can be used together with chemotherapy or given later if your CLL is no longer responding to chemotherapy. The most common type of biological therapy is called monoclonal antibodies. Antibodies are normal proteins made in your body that fight infection and cancer cells. Monoclonal antibodies are special proteins made in the laboratory that can be given to you. They attach themselves to specific proteins (antigens) on the surface of your lymphocytes. This prevents them from growing and causes them to die. Rituximab and alemtuzumab are the most widely used monoclonal antibodies in CLL. Rituximab can be combined with chemotherapy or other drugs and given as part of your first course of treatment. If chemotherapy no longer helps to kill the lymphocytes, you may receive alemtuzumab instead. Because this kind of drug is given by injection you will need to stay in the hospital day ward while receiving it. Normally it takes about 2 hours to give and then you will be allowed home. At first you may be given a low dose which is then gradually increased. Usually you receive alemtuzumab 3 days per week. For example, Mondays, Wednesdays and Fridays. The treatment may last from 4 to 12 weeks. During this time your doctor will do weekly blood tests to check if the drug is working. A response to the drug is usually seen after 4 to 8 weeks. Your doctor will decide how long you need to receive the drug. You may experience fever or headaches when first taking the drug but they usually last for a short while. For more information about the side-effects of monoclonal antibodies, see page 40. Because it is not known if monoclonal antibodies are harmful to unborn babies, you must take contraceptive precautions for at least 12 months after treatment. See page 42 for more details on fertility issues. Cancer Helpline Ê

14 24 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 25 Combination therapy Your doctor may decide to give you a number of different drugs. Chemotherapy, steroids and biological therapy can all be combined in various ways. Sometimes the combinations vary from hospital to hospital but all are recognised treatments. Here are some examples: FCR fludarabine, cyclophosphamide and rituximab C OP cyclophosphamide, vincristine (Onconvin) and prednisolone CHOP cyclophosphamide, doxorubicin (Adriamycin), vincristine (Onconvin) and prednisolone FC fludarabine and cyclophosphamide CAP chlorambucil, doxorubicin (Adriamycin) and prednisolone. Usually with FCR you receive the drugs for about 3 days every 4 weeks followed by a rest period. You may find that rituximab is not given in the first cycle. How does my doctor know the treatment is working? Your haematologist will know if your treatment is working by doing some tests. Mostly blood and bone marrow tests will be done on a regular basis during and after your treatment. In general your doctor measures your response to treatment by: Complete response: This means that you have no symptoms of the disease such as enlarged glands or a raised number of abnormal lymphocytes. However, complete response is not the same thing as cure. Partial response: Here your enlarged glands have reduced in size by half and also the number of abnormal lymphocytes. It means that your response to treatment has not been as good as a complete response. Minor response: This means that the response is not as good as a complete or partial response. High-dose therapy and stem cell transplantation For a small number of people with CLL it is possible to have a stem cell transplant. The aim is to give high doses of chemotherapy to destroy the blood cells in your bone marrow, including the leukaemia cells, and replace them with stem cells. These stem cells can then grow into new healthy blood cells. In some cases bone marrow will be transplanted instead of stem cells. Your doctor may decide on a transplant if you have not responded to chemotherapy or other treatments. Because it is an intensive treatment it is not suitable for everyone. Usually if you are under 60 and your general health is good you may benefit from this treatment. First your doctor will do many tests on your kidneys, heart and lungs to check that you are suitable for a transplant. Deciding on a transplant may not be easy option for you either. You will have your own priorities and concerns that will play a part in making the decision. In Ireland the stem cells are donated from a suitable relative, usually your brother or sister. This is called an allogeneic transplant. It means that your relative has the same tissue type as you. As a result, your chances of rejecting the stem cells are very low. The relative is called the matched donor when a blood test confirms their suitability. They will also need a number of other tests to make sure they are healthy and free from infection. What steps are involved in a stem cell transplant? Stem cell transplants take place in special treatment units only. You may spend up to 6 weeks in hospital from the time you come

15 26 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 27 in for the transplant until you are ready to go home. Usually you are admitted to the hospital a week before the transplant. This allows time for tests to be done and to insert a special drip called a Hickman line so that you can receive the stem cells. You will be given very high doses of chemotherapy to kill all the blood cells in your bone marrow both abnormal and normal cells. In some cases you may also receive total body radiation to kill any remaining abnormal cells. The stem cells are collected from your donor. This is done using a machine called a stem cell separator or apheresis machine. The fresh stem cells are then given to you as a transfusion. As soon as you receive the stem cells you will need to take anti-rejection (immunosuppressive) drugs daily. You then have to wait for the stem cells to settle in your bone marrow and start to grow and produce new blood cells. It can take from 2 to 3 weeks for the new white blood cells to develop. B C A A The central line is placed in a large vein here B The line is threaded under your skin C The line reaches the surface of your skin here To sum up After the high dose chemotherapy your white cell count will be very low. This means your immune system will be very low and you are at risk of developing infections. For this reason you will be nursed in a single room away from other patients and hospital staff for about 21 days. You may also need antibiotics for this period. During your time in isolation your visitors may be restricted. The hospital staff will also explain any precautions you may have to take with food, etc. Because there is also a risk of developing anaemia and bleeding, you may need blood or platelet transfusions at this time too. In general you can go home when your blood count is at a safe level. This means that your bone marrow is now producing normal blood cells. You may find that for the first 6 months you are in and out of hospital for regular check-ups, antibiotics or blood transfusions. If you would like more information or a free copy of the booklet Understanding Bone Marrow and Stem Cell Transplants, contact the National Cancer Helpline A very small number of those with CLL have a stem cell transplant. The aim of the treatment is to kill off the blood cells in your bone marrow and provide you with healthy new blood cells. Allogeneic transplants mean that the stem cells are taken from another person, usually your relative.

16 28 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 29 Some symptoms of CLL may need to be treated as soon as possible. Treatment of symptoms Some symptoms of CLL may need to be treated as soon as possible. These include infections, anaemia, bleeding or enlarged lymph glands. Infections If your white blood cells are low you will be prone to infections. These can include viral ones like colds, shingles and chickenpox. Bacterial infections such as pneumonias can also occur. You may need antibiotics orally or by injection. Antibodies called immunoglobulins may also be given to boost your immune system. At the hospital these are given by injection into a vein in your arm. You may need repeated doses of immunoglobulins while receiving chemotherapy too. Anaemia and bleeding problems If the number of your red blood cells is low, it can lead to fatigue and shortness of breath. If your platelets are low, you may have bleeding gums and find it hard to stop the bleeding from simple cuts and bruises. In both cases you may need to receive blood transfusions before and during your treatment. Enlarged spleen Some people with CLL may have an enlarged spleen. This can cause pain as well as bleeding problems. Your doctors may prescribe painkillers to ease any pain or discomfort you have. Radiotherapy may also be used to ease the pain or reduce the swelling. A small dose is normally only needed. Usually, you attend the radiotherapy unit for 5 days (Monday to Friday) for 2 weeks. The main side-effects of radiotherapy are skin changes like sunburn to the area being treated, tiredness, and a higher risk of infection. These are usually short term and do not last long. Call the National Cancer Helpline for more information about radiotherapy or a copy of the free booklet, Understanding Radiotherapy. In rare cases, your doctor may decide to remove your spleen. This operation is called a splenectomy. It can relieve pressure but it is not a cure for CLL. What side-effects can I expect? Before treatment, your haematologist will explain any possible side-effects of the drugs you will be given. Each drug may have different side-effects which can occur in the short term or long term. Nowadays, many side-effects can be prevented or controlled very well. Chemotherapy side-effects The side-effects of chemotherapy vary from person to person and depend on the type of drugs used. Not all chemotherapy drugs cause the same side-effects. Indeed some people may get very few. Most side-effects are short term and will gradually disappear once the treatment has stopped. The parts of your body usually affected by chemotherapy are those where normal cells grow quickly. These areas are your mouth, digestive system, skin, hair and bone marrow. It is important to let your doctor and nurse know if you are having any side-effects. He or she may be able to give you medication to help. Or they can make changes to your treatment to lessen their

17 30 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 31 effects. They will also give you advice on what to do if side-effects occur at home. Not all possible side-effects are listed here. Some of the more common ones include the following: Blood count problems Chemotherapy can affect your bone marrow and reduce the numbers of blood cells. Anaemia: If you have fewer red blood cells you may develop anaemia, which can cause fatigue, dizziness and shortness of breath. This can be treated by blood transfusions or a drug called erythropoietin. Infections: Fewer white blood cells in your body mean that you are more prone to infections. Your may hear your doctor or nurse call this neutropenia. If you feel shivery or unwell, or have a high temperature of 38 C or higher, contact the hospital straight away. You If you feel may need to go to hospital for antibiotics into your vein. shivery or In some cases, viral infections such as shingles may occur. unwell, or have a To reduce the risk of infection growth factors may be high temperature given. These drugs encourage the growth of white blood of 38 C or cells and are helpful if the number of white cells is low higher, contact after chemotherapy. The most commonly used growth the hospital factor is called G-CSF (granulocyte-colony stimulating straight away. factor). During each cycle of chemotherapy one dose of growth factor is usually given 24 hours after treatment. Bleeding problems: Fewer platelets causes bruising and bleeding. As a result, you may need to receive a platelet transfusion from time to time. Also, take great care to avoid cuts and grazes. Tips & Hints anaemia, infection, bleeding Take plenty of rests and breaks if you are feeling tired or fatigued. Avoid close contact, such as hugging or kissing, with people who have colds, flu s and other infections, especially chickenpox, shingles or measles. Wash your hands often during the day, especially before eating and after going to the toilet. Avoid unpasteurised milk, soft cheeses, undercooked meats and poultry, the skin of raw vegetables and fresh fruit. Take care to avoid injury. Avoid contact sports. Use an electric razor when shaving, a soft toothbrush when cleaning your teeth, and thick rubber gloves when gardening. Do not take aspirin as it can increase your risk of bleeding. Contact the hospital immediately if you have a temperature of 38 C (100.4 F) or higher, shortness of breath or bleeding that cannot be stopped. Fatigue While having chemotherapy and for some time afterwards, you may feel very tired (fatigued). Fatigue is a common symptom of leukaemia which is not always relieved by rest. You may also have a general feeling of weakness. It is best to allow yourself plenty of time to rest. In general the tiredness will ease off gradually once the chemotherapy has ended. For some people the tiredness may last for several months. The effects of other treatments may lead to fatigue too. Anaemia, pain and anxiety may also give rise to feelings of tiredness and fatigue. A helpful booklet called Coping with Fatigue is available from the Irish Cancer Society. Call the National Cancer Helpline for a free copy. Cancer Helpline Ê

18 32 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 33 Tips & Hints fatigue Stop before you get overtired. Build rest periods into your day. If you are going somewhere special, have a rest before you go out. Save your energy for doing the things you most enjoy. Ask for help at work or around the house, especially with cooking, housework or childcare. Keep your energy for eating. Eat little and often and use readymade meals or snacks. Wear clothes that are easy to put on and take off. Sit down when getting dressed or doing household jobs such as ironing, etc. If you find it hard to sleep, make sure your bedroom is quiet and not too hot or cold. Do some gentle exercise each day. Ask your doctor or nurse for advice. Go to bed each night at the same time. Each morning get up at same time and do not lie in. Use relaxation techniques to get to sleep: gentle exercise, relaxation tapes, etc. Avoid stimulants before bedtime, such as alcohol, coffee, tea, coke or chocolate. Nausea and vomiting Some chemotherapy drugs may make you feel sick (nausea) or be sick (vomit). The sickness may last for a few hours or, in rare cases, for several days. On the other hand, many people have no sickness at all with their chemotherapy. However, for those who do, there are very helpful treatments available. In fact this is less of a problem than it was in the past. Your doctor can prescribe anti-sickness medication to stop or reduce this side-effect. These are called anti-emetics. Anti-emetics may be given by injection with chemotherapy or as tablets to take home afterwards. Loss of appetite Some chemotherapy drugs can reduce your appetite for a while. If this happens, it may be a good idea to get advice from a dietician. A booklet called Diet and the Cancer Patient is also available from the Irish Cancer Society, which has helpful tips on boosting appetite. Call the National Cancer Helpline for a free copy. Tips & Hints eating and digestion If you feel sick or vomit, tell your doctor as soon as possible. He or she can prescribe anti-sickness drugs that usually work well. If you feel sick, iced water may help, or nibbling on dry biscuits and toast. Avoid eating or preparing food when you feel sick. Avoid fried foods, fatty foods or foods with a strong smell. Eat cold or warm food if the smell of hot food makes you feel sick. Eat several small snacks and meals each day, and chew the food well. Have a small meal a few hours before treatment, but don t eat just before treatment. Drink lots of fluid slowly, taking small sips. Avoid filling your stomach with lots of liquid just before you eat.

19 34 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 35 Diarrhoea Some chemotherapy drugs can affect the lining of your gut and may cause diarrhoea for a few days. Passing watery bowel motions more than twice a day is known as diarrhoea. You may also have cramping and/or abdominal pain. If this occurs it is best to drink lots of clear fluids to replace the fluid you are losing (2 litres a day). Remember to tell your doctor or nurse if you have diarrhoea for more than 24 hours. There is medication that can stop this side-effect of treatment. Again it might be useful to talk to a dietician who can offer advice at this time. Constipation Chemotherapy may slow down the movement of your bowel. Your regular bowel habit may change as a result. You may have difficulty passing a bowel motion too. This is known as constipation. If this occurs let your doctor or nurse know as soon as possible. You may need to drink more clear fluids and/or take a laxative. In some cases, your doctor may have to adjust your treatment. Tips & Hints diarrhoea and constipation If you have diarrhoea, eat less fibre and avoid raw fruit, cereals and vegetables. Drink plenty of liquids (3 litres a day) to replace the fluid lost in diarrhoea. If you are constipated, eat more fibre, raw fruit, cereals and vegetables. Drink plenty of fluids. Prune juice and hot drinks can often help. Take as much gentle exercise as you can. Mouth problems High doses of chemotherapy can cause a sore mouth or i n f l a m m a t i o n of your mouth (mucositis). This in turn can lead to mouth ulcers. If this happens it is usually about 5 to 10 days after the drugs are given. But it should clear up within a short period. Mouthwashes can be helpful, in particular salt-based ones (saline). Avoid alcohol mouthwashes as they can irritate your mouth even more. Mouth ulcers can become infected easily when your white cell count is low. Cleaning your teeth regularly and gently with a soft toothbrush will help to keep your mouth clean. Your doctor will also be able to give you medication, such as mycostatin, to help prevent or clear infections. For very sore mouths there are many kinds of gels, creams or pastes available to ease the soreness. Remember your doctor can also prescribe painkillers if your mouth becomes very sore. Tips & Hints mouth changes Eat fresh pineapple to keep your mouth fresh and moist. Clean your mouth or dentures gently every morning, evening and after each meal. Use a soft-bristled or child s toothbrush. Try a mouthwash if your toothpaste stings or brushing your teeth makes you feel sick. For example, dissolve half a teaspoon of bicarbonate of soda in a mug of warm water. Use a mouthwash regularly to prevent soreness if your doctor prescribes it for you. Keep your lips moist by using Vaseline or a flavoured lip balm. Avoid neat spirits, tobacco, hot spices, garlic, onion, vinegar and salty food. These may irritate your mouth. Cancer Helpline Ê

20 36 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 37 Keep your mouth and food moist. Add gravies and sauces to your food to make swallowing easier. Drink at least 2 litres of fluid a day. This can be water, weak tea, weak coffee, and soft drinks such as apple juice. Avoid acidic drinks such as orange and grapefruit juice. Warm herbal teas may be more soothing. Let your doctor know if you develop mouth ulcers, as you may need medication to help heal them and clear any infection. Changes in taste Chemotherapy can sometimes cause your sense of taste to change. Food may taste more salty, bitter or metallic. However, normal taste will come back after your treatment has ended. The Irish Cancer Society s booklet, Diet and the Cancer Patient, has some helpful advice on how to manage taste changes. Tips & Hints taste changes Eat only the foods that you like and avoid those that do not appeal to you. Use seasonings and herbs to flavour your cooking. Marinate food or use strongly flavoured sauces with food. Try sharp-tasting foods such as fresh mint to refresh and leave a pleasant taste in your mouth. Eat cold foods if you think they taste better than hot foods. Hair loss Hair loss or alopecia is a common side-effect of chemotherapy. But some drugs cause no hair loss or so little that it is hardly noticeable. Others cause partial or complete hair loss for a time. The amount of hair lost will depend on the type of drug or drugs Your hair will start to grow again once treatment stops. used, the dose given, and your individual reaction to the drug. Some chemotherapy drugs can make hair brittle. If this happens, your hair may break off near the scalp a week or two after the chemotherapy has started. If hair loss occurs, it is within a few weeks of treatment. Underarm, body and pubic hair may be lost as well. Some drugs also cause loss of your eyelashes and eyebrows. You may experience tingling or sensitivity of your scalp before your hair starts to fall out. This is normal and may last a day or so. Try not to worry, as your hair will start to grow again once your treatment stops. Your new hair may be curlier or finer than it was before, or it may be a slightly different colour. It is natural to feel upset at the thought of losing your hair. Don t be afraid to talk to your nurse or medical social worker about your feelings. He or she will help you find ways to cope with your hair loss. If you like, you can get a wig or hairpiece when this happens. Or you may prefer to wear a hat, bandana or silk headscarf. If you decide to get a wig, it is better to organise it before your hair falls out. This is because you will get a better match to your own hair colour at this time. Your medical social worker or nurse may be able to advise you about getting a wig. If your hospital does not have a medical social worker, ask if they have the name of a wig fitter that you could visit. In some cases it is possible to get financial assistance towards the cost of a wig or hairpiece. Some hospitals may supply your first wig free of charge or up to a certain limit. Two useful booklets about hair, Understanding Chemotherapy and How to Cope with Hair Loss, can be sent to you by calling the National Cancer Helpline

21 38 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 39 Changes to kidneys and bladder Some chemotherapy drugs can affect your kidneys. To prevent kidney damage, fluids may be given into your vein for several hours before you have any treatment. Your kidney function will be carefully checked by blood tests before each treatment. Drink as much fluid as you can, usually about 2 litres a day. If you notice any pain, discomfort or blood on passing urine, tell your doctor at once. Other changes You may notice other changes to your skin, nails, joints, hearing, nerve endings, sleep pattern, etc. Anxiety and headaches can occur too. Sometimes with leukaemia it can be very hard to tell if your symptoms are part of your illness or a side-effect of treatment. These symptoms can vary from time to time and be mild or severe. If you have symptoms that are troubling you, it is important to let your doctor or nurse know. There are many ways to help you cope with side-effects and make your life easier. If you would like more information about the side-effects of chemotherapy, contact the National Cancer Helpline for a free copy of the booklet, Understanding Chemotherapy. Fludarabine side-effects The following side-effects have been known to occur with fludarabine. Fever and chills Higher risk of infection Anaemia Tiredness Bruising and bleeding Loss of appetite Nausea and vomiting. Usually the fever and chills appear in the first week of treatment and settle down after a short while. Paracetamol and antihistamines may be given to ease them. You may become more prone to infections when receiving this drug too. In particular you may develop chest infections and require antibiotics for some months. It is best to avoid family or friends or anyone with an infection, especially viral ones such as flu s, shingles, chickenpox, etc. If you plan to take a holiday abroad and need vaccinations, talk to your haematologist first for advice. To reduce the risk of bleeding it is best to avoid contact sports while taking fludarabine. Use an electric razor when shaving and a soft toothbrush when cleaning your teeth. Steroid side-effects Steroids may be given at any stage of your treatment of CLL. These drugs are hormones made naturally in your body. There are many types of steroids but in general dexamethasone and prednisolone are used widely in CLL. In high doses they can give rise to several side-effects. But not everyone will experience the same ones. The more common side-effects include: Increased appetite and weight gain Mood changes irritability, anxiety, sleep disturbances, tearfulness, or high spirits Increase in blood pressure Stomach upset Increase in blood sugar diabetes Fluid retention Higher risk of infection, especially thrush Osteoporosis. While receiving steroids, blood tests will be done regularly to check your sugar levels.

22 40 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 41 Talk to your doctor and nurse if you experience any side-effects. Tips & Hints steroids Take steroids in the morning you may sleep better at night. Take steroids with milk or food to prevent stomach upset. Talk to the hospital dietician if you are putting on weight. Report any signs of infection to your hospital doctor and nurse a high temperature, cough, swelling or any inflammation. Do not stop talking steroids suddenly or without your doctor s advice it may lead to a sudden drop in blood pressure. Monoclonal antibodies side-effects The following side-effects are known to occur with monoclonal antibodies such as rituximab and alemtuzumab: Allergic response rashes, swelling of face and lips, etc. Fever, chills or pains Higher risk of infection Nausea and vomiting Low blood pressure Bleeding and bruising Chest pain. Usually most of these side-effects appear in the first week of treatment and settle down after a short while. Paracetamol and antihistamines may be given for the fever, chills, pain or any allergy symptoms. If you have nausea and vomiting, you may become a little dehydrated. It is best to drink plenty of fluids when taking these drugs. You may be prone to infections for up to 2 months after treatment but this may last much longer for some people. It is important to tell your doctors and nurses straight away if you experience any of the above side-effects or others not listed above. There are many ways to relieve them and make you feel better. These drugs do not cause hair loss. Will treatment affect my sex life and fertility? Sex and sexuality For some people sex is an important part of their relationships, while it is less so for others. During diagnosis and treatment you may lose the desire for sex. This is normal and there can be many reasons for it. Some aspects of treatment, such as losing your hair, may make you feel less sexually attractive. You may also just feel too tired or perhaps not strong enough for the level of physical activity you are used to during sex. If your treatment is making you feel sick, then you may want to put off having sex for a while. Anxiety or stress may play a part in losing your desire for sex. Often this anxiety is not about sex but other things. You may be worried about your chances of surviving your CLL, how your family is coping with your illness, or about your job and finances. Your emotions may be turned upside down and you may find it hard to relax. These are all normal feelings at this time. There is no set time for you to be ready to have sex again. It varies from person to person and may take a while. Often it depends on how long it takes you to adjust to your illness and treatment. Most changes are usually short term. If you have a supportive partner, talking about your feelings may help ease your anxiety. Your partner may have anxieties too and could be waiting for a sign that you are ready to discuss them. Even if you do not feel like having sex, you can still enjoy a close and loving relationship with your partner.

23 42 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 43 Some drugs used to treat CLL can cause either short term or lasting infertility. Discuss your worries before your treatment starts. Don t feel guilty or embarrassed about talking to your doctor or nurse about what is troubling you they are there to help you. If it is affecting you deeply, you can also be referred for specialist counselling, if you think that would be helpful. A useful booklet called Sexuality and Cancer is available from the Irish Cancer Society. Call the National Cancer Helpline for a free copy or for advice in confidence. Fertility Some drugs used to treat CLL can cause either short term or lasting infertility. It all depends on your type of treatment and your age at diagnosis. Your doctor will explain this in more detail to you before treatment begins. Bring along your partner when meeting your doctor so both of you can discuss your concerns. Treatment for CLL does not always cause infertility, so it is important that you or your partner do not become pregnant. Both men and women must take contraceptive precautions while taking chemotherapy, fludarabine and monoclonal antibodies and for at least 12 months after you stop taking the drugs. However, your doctor will let you know how long you should take contraceptive precautions. Also, you should not breastfeed during treatment and for 4 weeks afterwards, as the drugs may be passed on to your baby. It is not known if some of these drugs are harmful to your baby or not. Talk to your doctors and nurses if you are worried about any fertility issues relating to your drug treatments. You can also call the National Cancer Helpline Women and infertility Chemotherapy can damage the ovaries and reduce the amount of hormones produced. This means that you may be unable to become pregnant. This infertility may be temporary or permanent. It will all depend on the type and dose of drugs used in your CLL treatment and your age. Sadly, those who have received a bone marrow or stem cell transplant are likely to be permanently infertile following treatment. Before Before starting treatment, talk to your doctor about the starting possibility of egg banking. This involves freezing and storing chemotherapy, your eggs for future use. It is carried out at the HARI talk to your (Human Assisted Reproduction Ireland) Unit at the doctor about Rotunda Hospital in Dublin. For further information talk to egg or sperm your haematologist. You can also call the National Cancer banking. Helpline for more details and advice. See page 72 for details about contacting the HARI Unit for an information leaflet. In general most women who receive treatment for CLL have been through the menopause. But there is a small number that has not. In this case, you may find that your periods become irregular or stop altogether. The nearer you are to the menopause, chemotherapy is more likely to stop your periods permanently. Talk to your doctor if you experience any symptoms such as hot flushes, a dry vagina and skin, and less interest in sex. He/she may prescribe hormone replacement therapy (HRT). If you are a younger woman, your periods may return to normal after treatment, so it is important to continue taking contraceptive precautions during and after treatment. Cancer Helpline Ê

24 44 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 45 Men and infertility Chemotherapy drugs can lower the number of sperm cells and reduce their mobility. These changes may be temporary or permanent. Before starting treatment talk to your doctor about the possibility of sperm banking, This involves freezing and storing your sperm for future use. It is done at the HARI Unit at the Rotunda Hospital in Dublin. In general, it does not take long and will not affect your treatment. For further information talk to your haematologist. You can also call the National Cancer Helpline for more details and advice. See page 72 for details about contacting the HARI Unit for an information leaflet. Coping with infertility It is not easy to come to terms with infertility. You may feel devastated if told that you can no longer have children. The sense of loss can be painful regardless of your age or sex. It can take a while to sort out your emotions and be able to talk about them. Sometimes it can feel as though you have lost a part of yourself. You may also feel less of a man or less of a woman because you cannot have children. This is a normal reaction. Indeed people s reactions to infertility can vary. There is no right or wrong way to react. You may shrug it off or accept it calmly when first told. Indeed the full impact may only hit you when treatment is over. When you are ready, you may find it helpful to talk openly to your partner or a friend about these feelings. It is important to talk to your doctor or nurse too. He or she may arrange for you to speak to a trained counsellor or a specialist, if you cannot deal with any strong emotions you may have. Do seek professional help if infertility is likely to trouble you. What to do when off treatment Check-ups Once you are in remission, you can begin to return to normal life. However, you must attend the outpatient clinic for regular checkups by your haematologist. Blood tests and chest X-rays will need to be done as well. At first, these check-ups may be quite often but will become less frequent the longer you are well and free from illness. Sometimes you may need to go to hospital if you get an infection, as your immune system takes time to recover. Taking care of your health If you notice any new symptoms between check-ups or If you notice have any problems, contact your haematologist. Make an any new appointment to see him or her as soon as possible. In symptoms particular some people may experience pneumonia or other between checkups or have lung problems. You may find that you have excess mucus, coughing, pain, blocked sinuses or the sniffles. It is best to any problems, get the flu vaccine each winter too. Also, take good care of contact your your mouth, teeth or dentures as they can be a source of haematologist infection. If you develop any bowel problems such as or GP. persistent abdominal pain, diarrhoea, bleeding or constipation, contact your doctor as soon as possible. Work and activities If you stopped working for the duration of your treatment you can start to go back. But you might want to take it slowly at first by working part-time or reduced hours. You can also resume other activities such as sport, hobbies, etc.

25 46 Understanding chronic lymphocytic leukaemia Understanding chronic lymphocytic leukaemia 47 Holidays and insurance You may decide to go on a holiday once your treatment is over. Check with your doctor first about any special precautions to take or vaccinations you may need. It is best to have travel insurance too. Some insurance companies now provide cover for CLL patients. Contact the National Cancer Helpline for more details. Research what is a clinical trial? Research into new ways of treating leukaemia goes on all the time. If a treatment looks like it might be useful in treating leukaemia, it is given to patients in research studies called clinical trials. These aim to find a safe dose, see what side-effects may occur and which leukaemias can be treated. If early studies suggest that a treatment may be both safe and effective, further trials are carried out. These aim to: Find out if the treatment is better than existing ones. Find out if extra benefits result when the new treatment is given along with existing ones. Compare the new treatment with current best standard treatments. Many patients with leukaemia take part in research studies. Your doctor may ask you to try a new treatment. There are many benefits in doing this. You will be helping to improve knowledge about leukaemia. You will also be carefully m o n i to red during and a fter the study, so you will be quite safe. You cannot be included in a clinical trial without your permission. You can only give this consent if the trial has been fully explained to you, so that you understand what it is about. This is called informed consent. You will also need time to think about it and discuss it with your family or friends. If you decide not to take part, you will still be given the best treatment available. You are also free to withdraw from a trial at any time if you change your mind. As part of research into the causes of leukaemia, your doctors may ask your permission to store some samples of your blood cells or bone marrow. If you would like more information, a b o o klet called Understanding Ca n cer Research Tr i a l s (C l i n i cal Tr i a l s ) is available. Call the National Cancer Helpline for a copy.