Coping with chronic myelomonocytic leukaemia (CMML)

Coping with a rare cancer can be difficult, both practically and emotionally. Being well informed about your condition and its treatment can help you to make decisions and cope with what happens.

Taking in information can also be difficult, especially when you have just been diagnosed. It can help to make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask and help remember the answers. 

Don't be afraid to ask your doctor and nurse to explain things again if you need them to. You can also ask them for written information to take away with you. 

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. 

Ways to help yourself

The symptoms of CMML often mean that you feel less able to do everyday things. Talk to your doctor or nurse about any symptoms you have. There may be supportive treatments that can help you.

You may also feel better if you:

  • eat a healthy, well balanced diet

  • do some gentle exercise - after checking with your doctor or nurse first

  • rest when you are tired

Try to work out your priorities each day if you get tired easily. Talk to your family and friends and ask for any help you need. You can find tips about coping with tiredness in the section about fatigue and cancer.

Talking to other people

Talking to your friends and relatives about your CMML can help. But some people worry about the emotions this could bring up and won’t want to talk. They might also worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

Cancer Research UK

It can also help to talk to people with the same thing. But it can be hard to find someone with a rare condition. You can look at Cancer Research UK’s discussion forum - Cancer Chat. It is a place to share experiences, stories and information with other people who know what you are going through.

For support and information, you can call the Cancer Research UK information nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday. They can give advice about who can help you and what kind of support is available.


There are organisations that also offer help and support.

Leukaemia Care is a national blood cancer support charity, committed to ensuring that anyone affected by blood cancer receives the right information, advice and support. 

It provides a range of support services to patients and their carers, including information, support groups, patient and carer conferences, and nurse education days.

Freephone helpline: 08088 010 444 

Chat via WhatsApp on 07500068065

Blood Cancer UK funds research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website. 

Support line: 0808 2080 888 

Email address:

MDS UK Patient Support Group aims to increase awareness of MDS and offer support and information to patients and families. They campaign to increase the quality of life and make treatments available to those affected by myelodysplastic syndromes. They also have some information on the website for people living with CMML.

Telephone: 020 7733 7558

  • Improving supportive and palliative care for adults with cancer
    National Institute for Health and Care Excellence, 2004

  • Chronic myelomonocytic leukemia: 2022 update on diagnosis, risk stratification, and management

    M M Patnaik and A Tefferi

    American Journal of Haematology, 2022. Volume 97, Issue 3 Pages 352-372.

  • Diagnosis and Treatment of Chronic Myelomonocytic Leukemias in Adults

    Jihyun Kwon

    Blood Research, 20121. Volume 56, Supplement 1, Pages 5 -16.

Last reviewed: 
30 Oct 2023
Next review due: 
30 Oct 2026

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