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Chronic myeloid leukaemia (CML) treatment and side effects

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Chronic myeloid leukaemia (CML) treatment side effects

This section is about side effects of treatment for CML. We also have some important information on staying safe if you’ve got blood cancer, covering things like risk of infection and vaccinations.

Side effects of tyrosine kinase inhibitors (TKIs)

For most people on TKIs, side effects are not severe. However, you may notice some changes to your body that could be linked to the drugs you’re taking. If you do, it’s important to let your healthcare team know, as there are lots of things they can do to help you manage these side effects.

The following side effects are common to all TKIs:

  • extreme tiredness (fatigue)
  • fluid build-up
  • problems with your liver
  • skin rash
  • muscle cramps
  • joint pains
  • headaches
  • feeling sick (nausea) – if you’re taking imatinib, this can happen if you don’t take the drug on a full stomach
  • diarrhoea (frequent watery poos) – if you’re taking bosutinib, this can be particularly severe in the first few days
  • low blood counts – a low red blood cell count can cause tiredness (fatigue), a low white blood cell count can cause frequent infections, a low platelet count can cause bruising or bleeding.

To find out more about ways to reduce your risk of infection, order or download our fact sheet Understanding infection from our publications page.

Other TKI side effects

Some other side effects of imatinib include:

  • fluid build-up that causes puffiness around the eyes
  • dry, gritty eyes
  • haemorrhages into the white of the eye – these are not dangerous or harmful to your sight but can look unpleasant.

Some other side effects of dasatinib include:

  • fluid build-up between the lining of the lungs – it’s important to tell your doctor if you get a fever, a cough, or pain in the chest when you take a deep breath
  • tummy (abdominal) pain
  • shortness of breath
  • sickness (vomiting)
  • very rarely, blood in your stool (poo).

If you experience sickness and/or vomiting as a side effect of treatment, download our fact sheet, Managing sickness and vomiting.

Some other side effects of nilotinib include:

  • an itchy rash (more common than with other TKIs)
  • high blood pressure
  • higher blood glucose (sugar) levels
  • higher cholesterol levels
  • rarely, clots in the arteries of the heart, brain or lower legs. This might happen if you already have a higher risk of cardiovascular problems, for example if you smoke, have high blood pressure or a previous history of clots. You’ll be monitored closely for these side effects if you’re at greater risk.

Some other side effects of nilotinib include:

  • dry skin
  • high blood pressure
  • inflammation of the pancreas, an organ in the abdomen (stomach area) – if this happens you’d notice severe pain
  • clots in the arteries of the heart, brain or lower legs. This might happen if you already have a higher risk of cardiovascular problems, for example if you smoke, have high blood pressure or a previous history of clots. You’ll be monitored closely for these side effects if you’re at greater risk.

Fertility

Impact on fertility for women

While there’s no evidence that TKIs affect fertility (your ability to have a baby), doctors strongly recommend that you avoid becoming pregnant while you’re taking TKIs and use reliable contraception. This is because there’s evidence to suggest TKIs might be harmful to a baby in the womb (uterus).

If you think you might like to have children in the future, your doctor can refer you to a specialist who’ll explain all the options available to you. For example, you may want to think about storing your eggs or embryos (eggs that have been fertilised with your partner’s or a donor’s sperm), or coming off treatment for a period of time to become pregnant. Your doctor can make recommendations based on how you’re responding to treatment.

Pregnancy with CML

If you’re diagnosed with CML while you’re pregnant, or if you become pregnant after being diagnosed, your doctors will discuss your options with you. This might – if appropriate for you – include delaying or adapting your treatment until the baby is born. This is something you’ll need to think very carefully about and discuss with your healthcare team. There’s also evidence to suggest that TKIs are present in the breast milk of women taking them, so doctors recommend that you don’t breastfeed while taking them.

Early menopause following a stem cell transplant

If you have a stem cell transplant, it’s likely that the drugs used for the transplant will cause an early menopause (when the ovaries stop releasing an egg each month and you no longer have periods). This would mean you could no longer become pregnant naturally. You may want to discuss with your doctor ways to keep your fertility after the transplant. Some people can start hormone replacement therapy (a treatment that takes away some of the symptoms of menopause) soon after their transplant.

Impact on fertility for men

For men, there’s currently no convincing evidence to suggest taking TKIs at the time of conception could have a harmful impact on an unborn child. However, there is less information about the newer TKIs (bosutinib and ponatinib) so your doctor may suggest coming off treatment – if appropriate for you – if you decide to try for a baby. This is something you’d need to think very carefully about and discuss with your healthcare team.

Most hospitals and treatment centres will also recommend storing some of your sperm at the time when you’re diagnosed, but if this isn’t discussed with you, you can ask your healthcare team about it. If you are considering a stem cell transplant, it’s important to have this conversation with your healthcare team.

Late effects of TKIs

Because TKIs were only first introduced in the UK in 2003, we don’t fully understand the effects of taking them for life. During your treatment, your healthcare team may run tests to monitor you for long-term side effects. If you experience any new side effects while you’re taking TKIs, it’s important to let your nurse or doctor know.

Taking TKIs with other drugs

There’s some evidence to suggest that taking TKIs in combination with other treatments may cause more side effects than if you take them on their own. Your healthcare team can explain how this might affect any other medication you’re taking.

Paul's story

How I've adjusted to life with leukaemia

Paul's story

We're here for you if you want to talk

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sup[email protected]