Other treatments for chronic myeloid leukaemia

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1 Other treatments for chronic myeloid leukaemia This information is an extract from the booklet Understanding chronic myeloid leukaemia. You may find the full booklet helpful. We can send you a copy free see page 8. Contents Chemotherapy for CML Stem cell transplants Interferon alpha Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy or damage leukaemia cells. The drugs can be given as tablets or into a vein (intravenously). The chemotherapy circulates your blood and can reach leukaemia cells all over the body. Our booklet Understanding chemotherapy discusses the treatment and its side effects in detail. We can send you a copy. We also have fact sheets about individual chemotherapy drugs and their side effects. Chemotherapy for CML Although imatinib is usually the standard treatment for CML, chemotherapy is also occasionally used. It s most likely to be used if imatinib or other TK inhibitors aren t effective or cause severe side effects. Some people are given chemotherapy, usually with a tablet called hydroxycarbamide, when their CML is first diagnosed. This may happen when doctors are waiting for the results of tests to confirm the CML is of a type that s likely to respond to a TK inhibitor. In this situation, treatment is usually changed to imatinib once the test results are available. Usually, chemotherapy for CML involves taking a tablet, which only causes mild side effects. Macmillan and Cancerbackup have merged. Together we provide free, high quality information for all. Questions about cancer? Ask Macmillan Page 1 of 8

2 Occasionally, more intensive chemotherapy involving a combination of intravenous drugs is needed. This is usually used for the blast phase and causes more troublesome side effects than chemotherapy tablets. People who are treated with a stem cell transplant usually have intensive chemotherapy as preparation for the transplant. Chemotherapy tablets Chemotherapy used to treat CML in the chronic phase is usually given as tablets. The most commonly used drug is hydroxycarbamide. The doctor, nurse or pharmacist will tell you how many tablets to take. You need to be sure you re taking the right dose. The tablets are often taken every day for as long as they re working. The dose of the tablets may be changed depending on the results of regular blood tests. Treatment may be stopped for a while if the number of white blood cells falls below a certain level. For most people, the side effects from the tablets are mild. We can send you a fact sheet about hydroxycarbamide. Combination chemotherapy If CML starts to behave more like an acute leukaemia, or if you are going to have high-dose treatment with a stem cell transplant, you will be given more intensive chemotherapy. This generally consists of a combination of three or four drugs given by injection into a vein (intravenously). Your doctor or specialist nurse will give you information about the drugs and their possible side effects. To make having intravenous chemotherapy easier, and to prevent you from having frequent injections, a plastic tube called a central line can be put into a vein in your chest. Sometimes, instead of a central line, a PICC line (peripherally inserted central venous catheter) or an implantable port may be used. We can send you more information about central lines, PICC lines and implantable ports. Page 2 of 8 Questions about cancer? Ask Macmillan

3 Side effects of chemotherapy If you are taking a single chemotherapy tablet, any side effects you have will usually be mild. Treatment with a combination of two or more chemotherapy drugs may cause more troublesome side effects. Risk of infection Chemotherapy destroys the leukaemia cells in your blood, but it also temporarily reduces the number of healthy white blood cells. Your blood cell levels will be checked regularly while you re having treatment. If your white blood cell count is too low, you will be more at risk of infection and your treatment may be delayed for a while to allow it to recover. While having chemotherapy, you should contact your doctor or the hospital straight away if you: have a temperature above 38 C (100.4 F) suddenly feel unwell, even with a normal temperature have other signs of an infection, such as coughing up sputum. Anaemia, bruising and bleeding Chemotherapy can lower the number of red blood cells and platelets in the blood. A low red blood cell count is called anaemia and can cause tiredness and breathlessness. A low platelet count can cause blood-clotting problems and you may have bruising, nosebleeds or other abnormal bleeding. You should check for blood blisters in your mouth or a rash of pinprick-sized red spots (petechiae) on your legs. If your red blood cells or platelets take a while to recover, you may need a blood or platelet transfusion. You can have transfusions as an outpatient. Feeling sick (nausea) Some chemotherapy drugs can make you feel sick (nausea) or be sick (vomit). Your doctor will prescribe anti-sickness (anti-emetic) drugs if your chemotherapy treatment could make you sick. There are several effective anti-sickness drugs available, so if you feel sick let your doctor know. Sore mouth Some chemotherapy drugs can make your mouth sore and cause small ulcers. You may be given a mouthwash to use regularly. Your nurse will explain how to use it. Questions about cancer? Ask Macmillan Page 3 of 8

4 If your mouth is sore it s best to avoid alcohol and foods that are very hot, salty or highly spiced. Tiredness If you are having treatment with two or more chemotherapy drugs, or chemotherapy over a long period of time, you will probably feel more tired than usual. If you feel tired, plan some rest periods into your day. Try to balance rest periods with some gentle activities when you feel able. Hair loss Not all chemotherapy drugs cause hair loss. Whether you lose any hair during your treatment or not will depend on the treatment you have. Your doctor or chemotherapy nurse can tell you what to expect. We can send you more information about each of these side effects. Contraception It s important to use effective contraception during sex while you re having chemotherapy treatment, as the drugs might harm a developing baby if you or your partner becomes pregnant. Fertility Unfortunately, some chemotherapy treatment may cause infertility. This is the inability to become pregnant or father a child. It may be temporary or permanent, depending on the drugs you have. If you think you may want to have children in the future, talk to your doctors about this before starting chemotherapy treatment. They will be able to tell you if your fertility is likely to be affected and what options may be available. If you have a partner, it s a good idea for both of you to be there during these discussions. Don t be afraid to ask your doctor or specialist nurse any questions you have. We can send you more information about cancer and fertility. Page 4 of 8 Questions about cancer? Ask Macmillan

5 Stem cell transplants A stem cell transplant may benefit some people with CML. It s mainly used to treat people who haven t responded to treatment with a TK inhibitor. If your doctor thinks a transplant is necessary or possible for you, they will discuss it with you in more detail. Stem cell transplants are generally only carried out in specialist cancer treatment centres. A stem cell transplant allows you to have much higher doses of chemotherapy than usual. You may also have radiotherapy (high-energy rays) to the whole body. This can help improve the chances of curing the leukaemia or make a remission last longer. Stem cells are found inside our bone marrow. They make all the red blood cells, white blood cells and platelets in the blood. Planning a stem cell transplant involves collecting the stem cells from the bloodstream or bone marrow and storing them until they re needed. There are two types of stem cell transplant: allogeneic transplants when you are given stem cells from someone else (a donor) autologous transplants (also known as high-dose treatment with stem cell support) when you are given back your own stem cells. People with CML are treated using stem cells from a donor. Autologous transplants are only used in CML as part of a research trial. Our booklet Understanding cancer research trials (clinical trials) describes clinical trials in more detail. We can send you a copy. Stem cells from a donor (allogeneic transplant) The aim of this transplant is to give you a source of healthy bone marrow and to try to completely cure the leukaemia. The most suitable donor is usually a brother or sister who is genetically similar to you, or someone unknown to you (a volunteer unrelated donor) who is a genetic match. Questions about cancer? Ask Macmillan Page 5 of 8

6 In CML, an allogeneic transplant is usually carried out during the chronic phase when the disease is stable. A transplant may also be used after the blast phase has been treated and you re in remission, but it wouldn t usually be used as treatment for the blast phase. Our booklet Understanding donor stem cell (allogeneic) transplants contains detailed information about this treatment. High-dose treatment The first stage of treatment involves having high doses of chemotherapy, sometimes combined with radiotherapy. This destroys your own bone marrow completely. In some people, especially those who are older or less fit, the high-dose treatment can cause very serious side effects. Sometimes, it s possible to give lower doses of chemotherapy, which is called reduced intensity conditioning (RIC). These are called RIC or mini-transplants. After the chemotherapy (and radiotherapy if used), the donated stem cells are given to you through a drip into your central or PICC line. The new stem cells, known as the graft, take a few weeks to settle in your bone marrow and start making the blood cells you need. Because you re very vulnerable to infections during this time, certain precautions will be taken to protect you until your white blood cell count has recovered. You ll be looked after in a room on your own and may be given antibiotics to help prevent infections. The hospital or specialist centre where you are treated will have its own policies on how to care for you during this time. Your doctor or nurse will discuss this with you beforehand. Graft versus host disease (GvHD) When you have an allogeneic transplant, it s possible that the new cells (the graft) will react against your own tissues (the host). This reaction is called graft versus host disease (GvHD). Your doctors and nurses will monitor you carefully during the transplant, and for some months afterwards, for any signs of GvHD. If GvHD does occur, it doesn t mean the transplant has failed. Page 6 of 8 Questions about cancer? Ask Macmillan

7 It may even be of benefit, as some of the cells involved in the reaction may also attack any leukaemia cells that may have survived. You ll be prescribed drugs to help prevent GvHD and to make it less severe if it occurs. Our booklet Understanding high-dose treatment with stem cell support contains detailed information about this treatment. White blood cells from your donor (donor lymphocyte infusion) After an allogeneic transplant, your doctors will monitor your blood closely for leukaemia cells. Sometimes, a small number of leukaemia cells remain after an allogeneic transplant. This may be one of the reasons why CML comes back in some people. One way of getting rid of these leukaemia cells is to have treatment with a type of white blood cell called lymphocytes. These can also be taken from your donor. The lymphocytes help your immune system to reject the remaining leukaemia cells. This is known as the graft versus leukaemia (GvL) effect. They can be collected from your donor especially for this reason, or they may be taken and stored when the stem cells are originally collected. The lymphocytes are given through a drip into one of your veins (intravenously). This can be done in the outpatient department. Some people may need to have it done up to three or four times. Sometimes having a donor lymphocyte infusion can cause you to develop graft versus host disease. Interferon alpha Interferon alpha is a protein normally produced by the body during viral infections, such as flu. It may occasionally be given in the chronic phase of CML if other treatments haven t worked. Interferon alpha is given as an injection under the skin (subcutaneously) using a very fine needle. The injections are slightly uncomfortable. You or a relative or friend can be taught how to give these injections so they can be done at home. We can send you a fact sheet about interferon alpha. Questions about cancer? Ask Macmillan Page 7 of 8

8 Side effects Interferon alpha can cause various side effects. Some are similar to the symptoms of flu. They include: chills fever depression weight loss headaches aching in the back, joints and muscles tiredness. Some of these side effects can be reduced by taking a mild painkiller, such as paracetamol, before the injection. Your doctor can give you further advice. The side effects are most noticeable with the first one or two injections, and usually wear off after that. However, the tiredness may continue. More information and support Cancer is the toughest fight most of us will ever face. But you don t have to go through it alone. The Macmillan team is with you every step of the way, from the nurses and therapists helping you through treatment to the campaigners improving cancer care. We are Macmillan Cancer Support. To order a copy of Understanding chronic myeloid leukaemia or one of the other booklets or fact sheets mentioned in this information, visit be.macmillan.org.uk or call We make every effort to ensure that the information we provide is accurate but it should not be relied upon to reflect the current state of medical research, which is constantly changing. If you are concerned about your health, you should consult your doctor. Macmillan cannot accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as information on websites to which we link. Macmillan Cancer Support Registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Registered office 89 Albert Embankment, London, SE1 7UQ REVISED IN FEBRUARY 2012 Planned review in 2014 Page 8 of 8 Questions about cancer? Ask Macmillan