The treatment of chronic myeloid leukaemia depends on the phase of the illness. Your doctor will discuss the possible treatment options with you and the benefits and disadvantages of each.

In the chronic phase the aim of treatment is usually to control the condition, often for several years, and to prevent symptoms of the disease so that your quality of life is good.

The main treatment of chronic phase CML is a drug called imatinib (Glivec®). Glivec® is given as capsules. As an alternative some people are treated with interferon alpha, which is given as an injection under the skin, or sometimes chemotherapy tablets.

High-dose treatment with a stem cell transplant may be a suitable treatment for some people and can cure the leukaemia for some. This is more likely to be an option for younger people who have a brother or sister whose stem cells are a close match to their own.

Imatinib can be used in the accelerated phase, but only if it hasn’t been used in the chronic phase. If imatinib is not used, treatment is usually a combination of chemotherapy drugs, given by injection into a vein (intravenously). High-dose treatment with a stem cell transplant may also be used for some people.

In the blast phase the aim of treatment is to reduce symptoms and try to put the leukaemia back into a second chronic phase. Imatinib may be used, as long as it hasn’t been given before. Because blast phase CML is like an acute leukaemia, combinations of chemotherapy drugs that are used to treat acute leukaemia are often used. High-dose treatment with a stem cell transplant may also be an option if the leukaemia responds well to a combination of chemotherapy drugs.

Other treatments may be given to deal with conditions which may happen as a result of CML. When you are first diagnosed, your white blood cell count may be very high. This can occasionally lead to a clogging-up of blood vessels which may cause some physical problems. However, it can be treated by a process of removing the extra white cells from the blood - leukopheresis - (using a machine called a cell separator).

If you have myelofibrosis (scarring of the bone marrow) it is unfortunately not possible to reverse this process, but regular blood transfusions for anaemia, and antibiotics can keep you reasonably well for a long time.

In most hospitals a team of specialists will decide the treatment that is best for you. This multidisciplinary team (MDT) will include:

• one or more haematologists
• a doctor who specialises in chemotherapy and radiotherapy (a clinical oncologist)
• specialist nurses who give information and support
• pathologists who advise on the type and extent of the leukaemia.

Other staff will be available to help you if necessary, such as:

• social workers
• dietitians
• counsellors and psychologists
• physiotherapists.

The MDT will plan your treatment by taking into consideration a number of factors, including the stage of leukaemia and your general health.

You may be asked if you would be willing to take part in a clinical trial of a new treatment for CML.

If you have any questions about your treatment, don’t be afraid to ask your doctor or nurse. It often helps to make a list of questions for your doctor and to take a close friend or relative with you. They can remind you of questions you wanted to ask, and afterwards help you remember what the doctor said.

Before you have any treatment, your doctor will explain the aims of the treatment to you. They will usually ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent, and before you are asked to sign the form you should be given full information about:

• the type and extent of the treatment you are advised to have
• the advantages and disadvantages of the treatment
• any other treatments that may be available
• any significant risks or side effects of the treatment.

If you do not understand what you have been told, let the staff know straight away so that they can explain again. Some cancer treatments are complex, so it is not unusual for people to need repeated explanations.

Patients often feel that the hospital staff are too busy to answer their questions, but it is important for you to be aware of how the treatment is likely to affect you. The staff should be willing to make time for you to ask questions.

You can always ask for more time to decide about the treatment if you feel that you can’t make a decision when it is first explained to you.

You are also free to choose not to have the treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor, or the nurse in charge, so that they can record your decision in your medical notes. You do not have to give a reason for not wanting to have treatment, but it can be helpful to let the staff know your concerns so that they can give you the best advice.

Many people are frightened at the idea of having treatment for leukaemia because of the side effects that can occur. Although many of the treatments can cause side effects, these can usually be controlled or reduced with medicines. Some people ask what would happen if they didn’t have any treatment.

Treatment can be given for different reasons and the potential benefits will vary depending upon the individual person’s situation and the phase of the leukaemia.

Chronic phase

In people with chronic phase leukaemia, imatinib (Glivec®), interferon or chemotherapy are often given with the aim of keeping the leukaemia under control for a long time. These treatments improve quality of life for most people and do not usually cause many side effects.

Accelerated or blast phase

If the leukaemia is at a more advanced stage and more intensive chemotherapy is needed, the treatment may cause many more side effects. However, the drugs may be able to control the leukaemia for a significant period of time, leading to an improvement in symptoms and a better quality of life. For some people in this situation the treatment will have no effect upon the leukaemia and they may get the side effects without any of the benefit.

If you have been offered treatment in the chronic phase that aims to control the leukaemia for a long time and has few side effects, deciding whether to accept the treatment may not be difficult. However, if you are in the blast phase and have been offered more intensive treatment which may cause more side effects and has a lower chance of controlling the leukaemia, it may be more difficult to decide whether to go ahead.

Making decisions about treatment in these circumstances is always difficult, and you may need to discuss in detail with your doctor whether you wish to have treatment. If you choose not to, you can still be given supportive (palliative) care, with medicines to control any symptoms.

Usually a number of specialists work together as a team and they use national treatment guidelines to decide on the most suitable treatment for a patient. Even so, you may want to have another medical opinion. If you feel it will be helpful, your specialist or GP will be willing to refer you to another specialist for a second opinion. The second opinion may cause a delay in the start of your treatment, so you and your doctor need to be confident that it will give you useful information.

If you decide to go for a second opinion, it may be a good idea to take a friend or relative with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion.