Coping with chronic myeloid leukaemia (CML)
This page tells you about coping with chronic myeloid leukaemia (CML). You can find out about
Coping with chronic myeloid leukaemia (CML)
It can be very difficult coping with a diagnosis of CML, both practically and emotionally. You are likely to be feeling very confused and upset at first. You should have access to specialist cancer doctors and nurses, who can answer your questions about the leukaemia and its treatment. It is important that you have enough information to make decisions about your treatment, if that is what you want to do.
Understanding more about CML and its treatment will also help you cope. Many people have very definite ideas about what leukaemia means. But these are usually closer to the real situation for acute leukaemia, rather than chronic. CML does not develop anywhere near as fast as an acute leukaemia. It can be cured in some people and well controlled for years in others.
Help with other issues
Getting the support you need will help you cope. This may be emotional support or more practical help, such as dealing with money matters. The ‘coping with cancer’ section of CancerHelp UK contains a lot of information you may find helpful.
You can view and print the quick guides for all the pages in the Living with CML cancer section.
It can be very difficult coping with a diagnosis of CML both practically and emotionally. You are likely to be feeling upset and confused.
When you are diagnosed with CML you should have access to specialist cancer doctors and nurses, who can answer your questions about the disease and its treatment. It is important that you have enough information to make decisions about your treatment, if that is what you want to do. At every stage, you and your relatives should have clear and complete information from your doctors and nurses about all aspects of your cancer and treatment.
Many people have very definite ideas about what leukaemia means. But these are usually closer to the real situation for acute leukaemia, rather than chronic. You may find that you have to do quite a bit of educating other people about what your condition means. CML does not develop anywhere near as fast as an acute leukaemia. It can be cured in some people and well controlled for years in others. Imatinib (Glivec) is relatively new and so far very successful. We don't know how long it can control CML for yet because it hasn't been used for long enough. If your CML does become resistant to Glivec, or doesn't respond, there are other treatments you can have.
Adjusting to any new situation in life takes a while. Give yourself that time. There is no right or wrong way to approach this. But it will help if you have someone to share your feelings with. Even when you are not sure how you feel yourself.
As well as the support that is available to you at the hospital, there are leukaemia and cancer support groups around the country. Here you can discuss your feelings and fears with others who know what it is like to be told that you have leukaemia and have to cope with treatment. Your cancer nurse might be able to tell you about local support groups. Or look at our chronic leukaemia organisations page for organisations that can put you in touch with a support group.
As well as coping with the fear and anxiety that a diagnosis of CML brings, you have to work out how to manage practically. There may be money matters to sort out. Who do you tell that you have chronic leukaemia? And how do you find the words? There may be young children to consider.
The coping with cancer section of CancerHelp UK contains lots of information you may find helpful. There are sections on
- Your feelings
- Talking to people: who and what to tell
- Talking to children
- How else can you help yourself?
- Who else can help you?
- Financial support, including Government benefits and charity grants
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