Experiences with

Chronic myeloid leukaemia (CML)

SymptomsDiagnosisMedical treatmentsCauses

Symptoms of chronic myeloid leukaemia (CML) can include feeling tired, bleeding or bruising easily, looking paler than usual and getting ill a lot.

Tests to check for chronic myeloid leukaemia include blood tests and taking a sample of your bone marrow (biopsy) for testing.

Treatment for chronic myeloid leukaemia (CML) may include targeted medicines, chemotherapy or a stem cell transplant.

It's not clear what causes chronic myeloid leukaemia (CML). You may be more likely to get it if you're aged 65 or older.

Main symptoms of chronic myeloid leukaemia

Symptoms of chronic myeloid leukaemia (CML) are not always obvious and can be similar to other conditions.

You may not have any symptoms in the early stages.

If you do have symptoms, they can include:

  • feeling tired or weak
  • bleeding or bruising easily or for no reason
  • looking more pale than usual – on brown or black skin this may be easier to see on the palms of your hands or insides of your eyelids
  • getting ill a lot or taking longer than usual to recover from illnesses
  • swollen glands, usually in the neck, armpits and groin
  • aches and pains in your bones
  • loss of appetite or losing weight without trying
  • swollen tummy – your tummy may feel painful, uncomfortable or full
  • night sweats
  • headaches

Less common symptoms include:

  • blurred vision
  • swollen or painful joints
  • painful erections (priapism), or erections that do not go down

  • you have symptoms of chronic myeloid leukaemia

  • you have an erection that lasts more than 2 hours

An erection that lasts this long needs to be treated in hospital as soon as possible to avoid permanent damage to the penis.

Find your nearest A&E

Who is more likely to get chronic myeloid leukaemia

Chronic myeloid leukaemia (CML) is rare. It's not always clear what causes it.

Anyone can get it, but you may be more likely to get it if you're aged 65 or over.

Main tests for chronic myeloid leukaemia

If the GP refers you to a specialist (haematologist), you may need some tests to check for chronic myeloid leukaemia (CML).

Tests may include:

  • blood tests
  • taking a small sample from the bone marrow using a needle (biopsy), to be checked for cancer

If you have a bone marrow biopsy, you'll usually have a local anaesthetic to stop you feeling any pain. You may also be given medicine to help you relax (sedation).

Main treatments for chronic myeloid leukaemia

Chronic myeloid leukaemia (CML) usually develops very slowly. You may not need treatment straight away.

Treatment will depend on:

  • the phase (or stage) of your CML
  • your age
  • your general health

It will usually include targeted cancer medicines. You may also be offered chemotherapy or a stem cell transplant.

Treatments to prevent and manage symptoms (called supportive treatments) will also be offered.

The specialist care team looking after you will:

  • explain the treatments, benefits and side effects
  • work with you to create a treatment plan
  • help manage any side effects

You'll have regular check-ups during and after any treatments. You may also have tests and scans.

If you have any symptoms or side effects that you're worried about, talk to your specialists. You do not need to wait for your next check-up.

Where to find help and support

You and your loved ones will be supported throughout the treatment by a group of specialists.

The clinical nurse specialist, or another member of your specialist team, will be able to give you information on local support services that you may find helpful.

There are also national cancer charities that offer support and information about chronic myeloid leukaemia (CML).

Blood Cancer UK

Information and support for anyone affected by blood cancer.

Leukaemia Care

Information and support for anyone affected by leukaemia.

Macmillan Cancer Support

Information and support for anyone affected by cancer.

Cancer Research UK

Information and support for anyone affected by cancer.

Marie Curie

Care and support for anyone affected by a terminal illness.

Related links

Content supplied by the NHS website

HealthUnlocked contains information from NHS Digital, licensed under the current version of the Open Government Licence

5,505 public posts

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Safel
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Jm954
Administratorin CLL Support
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DHass22
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seeking alternative views

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hypopharynx fullness

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Reetywell71
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UK Telegraph Newspaper report

Mike Peters from a Welsh music band The Alarm had CLL for 29 years but was diagnosed with a Richters transformation this year. He received treatment in the UK STELLAR trial which adds Acalabrutinib to the usual R-CHOP chemotherapy. He's had a spectacular response and his story is here http://digitaleditions.telegraph.co.uk
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Jm954
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Has Anyone on Here Got Richters Transformation

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Mahler5
in CLL Support

GailCat3

I’ve had CLL B cell for 16 years. I had a great Oncologist but she moved 11/2 years ago so she used to do bone marrow biopsies to check my CLL. My new oncologist does pet scans but as far as I know that just checks for the Lymphoma part off CLl. If I have no tumors she says my cancer isn’t active. But
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GailCat3
in CLL Support

I got this further information from the doctor. Can anybody interpret it for me?

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Fred_Green
in CLL Support

Chemo-Free Triplet Yields 68% Response Rate in Richter Transformation

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Is there anyone with experience in bladder cancer treatment?

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RamsesII
in CLL Support

NIH visit and Richters discussion

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BigfootT
in CLL Support

Our story !

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htam
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Venetoclax

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jroon08
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