Side effects of treatment
Most people with CML will be treated with tyrosine kinase inhibitors (TKIs). Some people on TKIs experience mild side effects, whilst some have none at all. Others find the drugs take a bit more getting used to.
Common side effects of TKIs
The following side effects are common for all types of tyrosine kinase inhibitor (TKI), but this doesn’t mean you will experience any or all of them. Everyone is different and reacts differently, even if you’re on the same TKI as someone you know.
- extreme tiredness (fatigue)
- problems with your liver
- skin rashes, including an itchy scalp
- muscle cramps
- joint pains
- headaches
- feeling or being sick (nausea)
- diarrhoea (frequent watery poos)
- fluid retention (oedema).
You might also have some additional side effects based on your blood counts. For example, if you don’t have enough healthy white blood cells you are more likely to suffer from infections. If your platelet count is low you may experience unusual bruising or bleeding.
The leaflet that comes with your TKI may also list some side effects that other people on that drug have experienced. These can be alarming to read, but it doesn’t mean you will definitely suffer with any or all of the side effects mentioned.
Managing side effects
Always tell your hospital team about any side effects you experience. They may be able to help with your symptoms, for example recommending anti-sickness medication. They may also be able to adjust the dose of the TKI you’re on, or swap you onto a different TKI if the side effects are too difficult to cope with.
You can also visit your GP or pharmacist and ask about side effects – they may be able to prescribe something to help, or recommend an over-the-counter medication or a self-help method.
Remember, everyone reacts differently to treatment, even if they're on the same drug, so you might have a different experience to someone you know.
You can also read our general information about side effects and how to manage them.
"It's really important to advocate for yourself when it comes to treatment. Speak to your team, tell them what's important to you and keep asking questions."
Katie, living with CML since 2007
Drug interferences
There is some evidence that taking TKIs in combination with other medications might cause more side effects than taking them on their own. It is also possible that TKIs could interfere with treatment for different conditions. Your hospital team will discuss this with you if it applies to you and your treatment.
It’s important to avoid eating grapefruits, drinking grapefruit juice, or taking antacids such as Gaviscon or Rennies whilst you’re on a TKI. This is because they can affect how your body absorbs the treatment.
Reflux medication such as Omeprazole can also affect how TKIs are absorbed. Speak to your GP or hospital team if you suffer from heartburn or indigestion, or are taking any prescribed or over-the-counter reflux medication.
Late effects
TKIs were only introduced in the UK in the early 2000s, so doctors don’t fully understand the effects of taking them for life yet. This is why it’s really important to go to all your check-up appointments and have all of your tests, so that your hospital team can monitor your side effects and how you respond to the drugs.