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Ponatinib (Iclusig)

Ponatinib is a type of targeted cancer drug. It is also called by its brand name Iclusig. You might have it as a treatment for:

  • chronic myeloid leukaemia where the leukaemic cells have gene change (mutation) called T315I
  • acute lymphoblastic leukaemia that has an abnormal chromosome called the Philadelphia chromosome, or has the T315I mutation

You may also have it as part of clinical trials for other cancers.

How it works

Ponatinib is a type of drug called a protein tyrosine kinase inhibitor (TKI). Tyrosine kinases are proteins that act as chemical messengers to stimulate cancer cells to grow. Ponatinib blocks and interferes with a number of protein kinases. It is called a multi kinase inhibitor.

How you have it

Ponatinib comes as tablets. You swallow the tablets whole with a glass of water once a day. You can take them with or without food.

Taking your tablets or capsules

You must take tablets and capsules according to the instructions your doctor or pharmacist gives you.

You should take the right dose, not more or less.

Never stop taking a cancer drug without talking to your specialist first.

When you have it

You usually carry on taking ponatinib for as long as it works, unless the side effects get too bad.  

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

Side effects

We haven't listed all the side effects. It's very unlikely that you will have all of these side effects, but you might have some of them at the same time.

How often and how severe the side effects are can vary from person to person. They also depend on what other treatments you're having. For example, your side effects could be worse if you're also having other drugs or radiotherapy.

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you closely during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

  • you have severe side effects 
  • your side effects aren’t getting any better
  • your side effects are getting worse

Early treatment can help manage side effects better. 

Contact your doctor or nurse immediately if you have signs of infection, including a temperature above 37.5C or below 36C.

Common side effects

Each of these effects happens in more than 1 in 10 people (10%). You might have one or more of them. They include:

Increased risk of getting an infection

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, headaches, feeling cold and shivery and generally unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection. 

Breathless and looking pale

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.

Bruising, bleeding gums or nosebleeds

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).

Skin changes 

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes. Your nurse will tell you what products you can use on your skin to help.

Pain

You might feel some pain from your muscles and joints. Speak to your doctor or nurse about what painkillers you can take to help with this.

Headaches

Tell your doctor or nurse if you keep getting headaches. They can give you painkillers to help.

Dizziness

This drug may make you feel drowsy or dizzy. Don’t drive or operate machinery if you have this.

High blood pressure

Tell your doctor or nurse if you have headaches, nose bleeds, blurred or double vision or shortness of breath. Your nurse will check your blood pressure regularly.

Cough

You might develop a cough or breathing problems. This could be due to infection, such as pneumonia or inflammation of the lungs (pneumonitis). Let your doctor or nurse know straight away if you suddenly become breathless or develop a cough.

Loss of appetite

You might lose your appetite for various reasons when you are having cancer treatment. Sickness, taste changes or tiredness can put you off food and drinks.

Difficulty sleeping

It can help to change a few things about how you try to sleep. Try to go to bed and get up at the same time each day and spend some time relaxing before you go to bed. Some light exercise each day may also help. 

Tiredness and weakness (fatigue)

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. Avoiding fatty or fried foods, eating small meals and snacks, drinking plenty of water, and relaxation techniques can all help.

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treating it once it has started.

Fluid build up (swelling)

This usually goes away on its own, but tell your doctor or nurse if you have it.

Constipation

Constipation is easier to sort out if you treat it early. Drink plenty of fluids and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your doctor or nurse if you are constipated for more than 3 days. They can prescribe a laxative.

Diarrhoea

Contact your advice line if you have diarrhoea, such as if you've had 4 or more loose watery poos (stools) in 24 hours. Or if you can't drink to replace the lost fluid. Or if it carries on for more than 3 days.

Your doctor may give you anti diarrhoea medicine to take home with you after treatment. Eat less fibre, avoid raw fruits, fruit juice, cereals and vegetables, and drink plenty to replace the fluid lost.

Occasional side effects

Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them. They include:

  • Flu symptoms
  • inflammation of the pancreas (pancreatitis)
  • heart problems
  • weight loss
  • dehydration
  • increased risk of stroke
  • numbness or tingling in the hands or feet
  • blood clots
  • fluid on the lungs
  • voice changes
  • eye problems
  • problems getting an erection
  • liver changes
  • change in blood sugar (glucose) levels
  • low levels of thyroid hormones

Rare side effects

Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them. They include:

  • yellow skin and eyes (jaundice)
  • a stomach bleed
  • high uric acid levels in the blood due to the breaking down of cancer cells

Possible long term side effects

Ponatinib is a fairly new drug in cancer treatment. This means that there is limited information available at the moment about possible longer term effects that it may cause. Tell your doctor if you notice anything that is not normal for you.

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do I need to know?

Other medicines, foods and drinks

Cancer drugs can interact with some other medicines and herbal products. Tell your doctor or pharmacist about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies.

Some medicines, foods and herbal supplements that contain CYP enzymes can interfere with how ponatinib works. Speak to your doctor about this. 

You should not eat grapefruit or drink grapefruit juice when you are taking this drug because it can react with the drug.

Pregnancy and contraception

This treatment might harm a baby developing in the womb. It is important not to become pregnant or father a child while you're having treatment and for a few months afterwards. Talk to your doctor or nurse about effective contraception before starting treatment.

Breastfeeding

Don’t breastfeed during this treatment because the drug may come through into your breast milk.

Fertility

You may not be able to become pregnant or father a child after treatment with this drug. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Men might be able to store sperm before starting treatment. And women might be able to store eggs or ovarian tissue. But these services are not available in every hospital, so you would need to ask your doctor about this.    

Treatment for other conditions

Always tell other doctors, nurses, pharmacists or dentists that you’re having this treatment if you need treatment for anything else, including teeth problems.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and the shingles vaccine (Zostavax).

You can:

  • have other vaccines, but they might not give you as much protection as usual
  • have the flu vaccine (as an injection)

Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine.

If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray. This is for 2 weeks following their vaccination.

Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.

More information about this treatment

For further information about this treatment go to the electronic Medicines Compendium (eMC) website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.

Information and help