Treatment for chronic myeloid leukaemia
How CML is treated depends on the phase of the illness, your general health, your age and level of fitness. Your doctor will discuss the possible treatment options with you and the advantages and disadvantages of each.
In the chronic phase, the aim of treatment is for your blood count to return to normal, and to keep you feeling well for many years – possibly for your normal lifespan.
People are usually treated with a tablet called imatinib (Glivec®). Imatinib is a type of targeted therapy called a tyrosine kinase inhibitor. TK inhibitors have greatly improved the outlook for people with CML.
Many people have been taking imatinib for 10 years or longer without any problems from their leukaemia.
Other TK inhibitors, such as dasatinib (Sprycel®) and nilotinib (Tasigna®), can be used if imatinib doesn’t work or if you can’t take it due to problems with side effects.
Stem cell transplants (sometimes called bone marrow transplants) may be used if you have CML that hasn’t responded to TK inhibitor treatment.
Imatinib or another TK inhibitor can be used in the accelerated phase, but only if they haven’t been used in the chronic phase. If a TK inhibitor isn’t used, you’ll usually be treated with a combination of chemotherapy drugs, given by injection into a vein (intravenously). High-dose treatment with a stem cell transplant may also be used in some people.
In the blast phase the aim of treatment is to reduce symptoms and to try to put the leukaemia back into a second chronic phase. TK inhibitors may be used as long as they haven’t been given before. Blast-phase CML is like an acute leukaemia, so combinations of chemotherapy drugs used to treat acute leukaemia are often given. If the leukaemia responds well to either TK inhibitors or chemotherapy, the doctors may recommend high-dose treatment with a stem cell transplant.
Some people have a very high number of white blood cells in their blood when they’re diagnosed with CML. The cells can clog up blood vessels and cause physical problems. Doctors may treat this by removing the excess cells from the blood using a machine called a cell separator. This process is called leukapheresis.
How your treatment is planned
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Haematologists follow national and international guidelines for treating CML. Your treatment will be based on these guidelines but tailored to your particular situation.
In most hospitals a team of specialists will decide on the treatment that’s best for you.
This multidisciplinary team (MDT) may include:
one or more haematologists
a doctor who specialises in chemotherapy and giving radiotherapy (oncologist)
specialist nurses who give information and support.
It may also include other healthcare professionals, such as a dietitian, physiotherapist, occupational therapist, psychologist or counsellor.
The MDT will take a number of factors into account when advising you on the best course of action, including the stage of the leukaemia and your general health.
You may be invited to take part in a clinical trial of a new treatment for CML.
Before you have any treatment, your doctor will explain its aims. They will 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
its advantages and disadvantages
any significant risks or side effects
any other possible treatments that may be available.
If you don’t understand what you have been told, let the staff know straight away so they can explain again. Treatments for leukaemia can be complex, so it’s not unusual for people to need repeated explanations.
It’s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment.
People sometimes feel that hospital staff are too busy to answer their questions, but it’s important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions.
You can always ask for more time if you feel that you can’t make a decision when your treatment is first explained to you.
You’re also free to choose not to have the treatment. The staff can explain what may happen if you don’t have it. It’s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don’t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice.
The benefits and disadvantages of treatment
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Many people are frightened at the idea of having leukaemia treatments, particularly because of the side effects that can occur. However, these can usually be controlled with medicines.
Treatment can be given for different reasons and the potential benefits will vary depending upon your individual situation.
If you’ve been offered treatment in the chronic phase, which aims to control the leukaemia for a long time and has few side effects, deciding whether or not to have 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 or not 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 or not. If you choose not to have treatment, you can still be given supportive (palliative) care with medicines to control any symptoms.
If you want to stop your treatment, it’s important to tell a doctor or the nurse in charge. They can discuss your decision with you and offer you advice. They will also make a record of your decision in your medical notes.
Your multidisciplinary team uses national and international treatment guidelines to decide on the most suitable treatment for you. Even so, you may want to have another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion.
Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident it will give you useful information.
If you decide to go for a second opinion it may be a good idea to take a relative or friend with you and have a list of questions ready, so that you can make sure your concerns are covered during the discussion.