Ponatinib (Incyte)

Ponatinib is a type of targeted cancer drug  called a tyrosine kinase inhibitor (TKI). You pronounce it as poe-na-ti-nib. It is also known as Incyte.

It is a treatment for:

• chronic myeloid leukaemia (CML)
• acute lymphoblastic leukaemia (ALL) that has an abnormal chromosome called the Philadelphia chromosome

Talk to your doctor about whether you can have ponatinib.

How does ponatinib work?

Tyrosine kinases are proteins that act as chemical messengers. They encourage cancer cells to grow.  

Ponatinib blocks and interferes with a number of tyrosine kinase proteins. It’s called a multi tyrosine kinase inhibitor. It helps shrink the cancer or stops it growing.

How do you have ponatinib?

Ponatinib comes as tablets. You swallow the tablets whole with a glass of water. You shouldn’t crush or dissolve the tablets. You can take them with or without food.

Taking your tablets

How often do you have ponatinib?

You take ponatinib once a day.

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.

Before treatment starts, you have a blood test to check for viruses such as hepatitis B, hepatitis C, HIV or cytomegalovirus (CMV) . This treatment can mean that your immune system  doesn't work as well as it normally does. So infection with these viruses can become active again if you’ve had them in the past. 

What are the side effects of ponatinib?

Side effects can vary from person to person. They also depend on what other treatments you're having. 

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you 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. 

We haven't listed all the side effects here. Remember it is very unlikely that you will have all of these side effects. But you might have some of them at the same time.

Common side effects

These side effects happen in more than 10 in 100 people (more than 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 problems

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes.

Less often you might get swelling and redness where the hairs come out of your skin (follicles) or peeling skin. Your skin might also become thicker and harder. Or you may get redness and swelling under your skin (cellulitis).

Other less common problems include itchy, red and flaky skin and blisters, or changes in skin colour.

Rarely ponatinib can cause a severe skin reaction. This may start as tender red patches which leads to peeling or blistering of the skin. You might also feel feverish and your eyes may be more sensitive to light. This is serious and could be life threatening.

Let your doctor, nurse or pharmacist know if there are any skin changes. They can let you know what can help to ease the discomfort.

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.

You may also feel pain in your limbs or bones in general. Less often you might get muscle cramps (spasms).

Headaches

Tell your healthcare team if you keep getting headaches. They can check the cause and give you painkillers to help.

Less often you might get a migraine.

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, nosebleeds, blurred or double vision or shortness of breath. You have your blood pressure checked regularly.

Rarely your blood pressure may go very high. If it does, you may also feel confused, have chest pains or have a seizure (fit). Your doctor can refer you to a specialist straight away if your blood pressure is very high. 

Cough or breathing problems

You might develop a cough or breathing problems. This could be due to infection like a cold. Less often it might be due to pneumonia .

Loss of appetite

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

Difficulty sleeping

If you have 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. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also 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 treat it once it has started.

Fluid build up (swelling)

A build up of fluid that may cause swelling in your arms, hands, legs and feet. This usually goes away on its own, but tell your doctor or nurse if you have it.

Less often you might get swelling of your face and around your eyes.

Constipation

Constipation is easier to sort out if you treat it early. Drink plenty and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your healthcare team if you think you are constipated. They can give you a laxative if needed.

Diarrhoea

Contact your advice line if you have diarrhoea. For example, in one day you have 2 or more loose bowel movements than usual. If you have a stoma , you might have more output than normal. Your doctor may give you anti diarrhoea medicine to take home with you after treatment.

Try to eat small meals and snacks regularly. It’s best to try to have a healthy balanced diet if you can. You don’t necessarily need to stop eating foods that contain fibre. But if your diet is normally very high in fibre, it might help to cut back on high fibre foods such as beans, nuts, seeds, dried fruit, bran and raw vegetables. 

Drink plenty to try and replace the fluid lost. Aim for 8 to 10 glasses per day.

Tummy (abdominal) pain and bloating

Ponatinib might cause abdominal pain, or less often you can feel uncomfortable or bloated. Tell your healthcare team if you have this. They can check the cause and give you medicine to help.

Liver and pancreas changes

You might have liver changes that are usually mild and unlikely to cause symptoms. They usually go back to normal when treatment finishes.

Your doctor or nurse will regularly check how well your liver is working during treatment. Tell them straight away if your urine looks much darker than usual or your skin or eyes look yellow.

Less often you might get pancreatitis . Tell your doctor straight away if you have sudden and severe pain in your abdomen.

Rarely your liver can be damaged or can stop working.

High temperature (fever)

Tell your healthcare team straightaway if you get a high temperature. Ask them if you can take paracetamol to help lower your temperature.

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• blood clots - these can be life threatening. Signs include pain, swelling and redness where the clot is. Feeling breathless can be a sign of a blood clot in the lung. Contact your advice line or doctor straight away if you have any of these symptoms
• changes to the blood supply to the brain which can lead to a stroke.  Symptoms are weakness down one side, slurring of speech and not responding to people or pain
• narrowing of the blood vessels in your arms or legs. Symptoms include pain when walking, numbness and weakness and your legs may turn paler than usual
• flu-like symptoms such as an aching body and feeling tired
• heart problems that can cause chest pain and a fast heart beat. You may also feel short of breath or have swollen feet and ankles
• weight loss
• a low level of fluid in the body (dehydration)
• numbness or tingling in the hands or feet
• changes in how sensitive your skin is to touch
• fluid in the lungs
• voice changes
• eye problems including changes to your eyesight or loss of sight, blurred vision, dry eyes and swelling around the eyes
• problems getting an erection
• high blood sugar (glucose) levels in your blood
• a change in the levels of minerals, salts and fats in your blood
• hot flushes and sweating
• a sore mouth
• low levels of thyroid hormones
• hair loss (alopecia)
• indigestion or acid reflux
• a stomach bleed. Tell your doctor or nurse straight away if you have sudden pain in your abdomen or if you vomit blood
• another type of cancer
• chest pain that isn’t caused by a problem with your heart

Rare side effects

These side effects happen in fewer than 1 in 100 people (fewer than 1%). You might have one or more of them. They include:

• changes to the levels of chemicals in your blood due to the breakdown of tumour cells. This is called tumour lysis syndrome - you have regular blood tests to check for this

• bleeding in your brain

• posterior reversible encephalopathy syndrome (PRES). This is a rare disease of the nerves that causes headache, seizures, confusion and changes in vision. Contact your health team straight away if you get these symptoms

• narrowing of the arteries of the brain and kidneys

Other side effects

There isn’t enough information to work out how often these side effects might happen. You might have one or more of them. They include:

• weakness in a blood vessel wall causing it to bulge. This is called an aneurysm which sometimes can rupture (burst)
• tear in one of the main arteries

These are both an emergency. You should call 999 if you think you have them. Symptoms depend on which blood vessel is affected. But they normally include sudden severe pain, sweating and shortness of breath. 

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 medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Loss of fertility

You may not be able to become pregnant or get someone pregnant 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.    

Pregnancy and contraception

This treatment might harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you're having treatment and for a few months afterwards.

Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you or your partner become pregnant while having treatment.

Breastfeeding

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

Treatment for other conditions

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

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 one of the shingles vaccines called Zostavax.

You can have:

• other vaccines, but they might not give you as much protection as usual
• the flu vaccine (as an injection)
• the coronavirus (COVID-19) vaccine - talk to your doctor or pharmacist about the best time to have it in relation to your cancer treatment

Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your immune system recovers from treatment.

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. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.

If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. 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 and possible side effects go to the electronic Medicines Compendium (eMC) website. You can find the patient information leaflet on this website.

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