Ponatinib

Ponatinib is used to treat some types of leukaemia. It is best to read this information with our general information about the type of cancer you have.

Ponatinib belongs to a group of targeted therapies drugs known as cancer growth inhibitors. Ponatinib blocks (inhibits) messages sent by proteins (kinases) that make leukaemia cells grow. This can help stop these cells from making more leukaemia cells.

Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.

This information is correct at time of publishing. But sometimes the types of cancer this treatment is used for, or treatment side effects, may change between revision dates.

You can talk to your cancer team if you want more detailed information about this treatment. Or visit the electronic Medicines Compendium (eMC) website, which has patient information leaflets (PIL) for individual drugs.

You will be given ponatinib as tablets to take at home.

During treatment you usually see a cancer doctor, a cancer nurse or specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.

You will have regular blood tests during your treatment. This is to check that your blood cells are at a safe level to have treatment.

It is important to take your ponatinib tablets exactly as your nurse or pharmacist explains. This is to make sure they work as well as possible for you.

You take ponatinib tablets once a day. Take the tablets at the same time each day with or without food. Swallow the tablets whole with a glass of water. Do not chew, dissolve or crush your tablets.

If you forget to take your ponatinib, do not take a double dose. Keep to your regular schedule and tell your doctor or nurse.

Other things to remember about your tablets include the following:

• Do not eat grapefruit or drink grapefruit juice while you are taking ponatinib.
• Keep the tablets in their original packaging, at room temperature, and away from heat and direct sunlight.
• Keep the tablets safe and out of sight and reach of children.
• If you are sick just after taking the tablets, contact the hospital. Do not take another dose.
• If your treatment is stopped, return any unused tablets to the pharmacist.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C 
• a temperature below 36°C
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

You will have regular blood tests during treatment. If your white blood cell count is low, your doctor may stop your treatment for a short time, until your cell count increases. Sometimes they will reduce the dose of your treatment.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

This treatment can lower the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily.

Before taking ponatinib tell your doctor if you are taking any medicines that may affect bleeding. If you are unsure whether they affect bleeding, tell your doctor about all of them.

Contact your doctor straight away if you have any:

• nosebleeds
• bleeding gums
• heavy periods
• tiny red or purple spots on your skin tha may look like a rashes
• blood in your urine (pee) or stools (poo)
• unusual bleeding, including vomiting or coughing up
• unexpected vaginal bleeding

You may need a drip to give you extra platelets. This is called a platelet transfusion.

Feeling tired is a common side effect. Try to pace yourself and plan your day so you have time to rest between activities.

Being physically active can help to manage tiredness and give you more energy. It also:

• helps you sleep better
• reduces stress
• improves your bone health.

If you feel sleepy, do not drive or operate machinery.

Ponatinib can sometimes affect how well you sleep. Tell your doctor or nurse if you are having difficulty sleeping.

If you feel sick this is usually mild. Tell your nurse or doctor if this happens. They can give you anti-sickness drugs to help prevent sickness.

If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit), contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may change the anti-sickness drug to one that works better for you.

This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. You may also have stomach cramps. If you have a stoma, it may be more active than usual. 

If you are passing loose stools 3 or more times a day and this is not normal for you, contact the hospital as soon as possible on the 24-hour number. Follow the advice they give you about:

• taking anti-diarrhoea medicines 
• drinking enough fluids to keep you hydrated and to replace lost salts and minerals
• any changes to your diet that might help. 

They might also ask you for a specimen of your stool to check for infection.

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

• Drink at least 2 litres (3½ pints) of fluids each day.
• Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
• Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital on the 24-hour number for advice. They can give you drugs called laxatives to help. 

If you have not been able to pass stools for over 2 days and are being sick, contact the 24-hour number straight away. 

This treatment affect your skin. It may cause a rash, which might be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

Always tell your doctor or nurse about any changes to your skin. They can give you advice and may prescribe creams or medicines to help.

Rarely, a much more serious skin condition can develop.

You may have a skin rash which then blisters, and your skin can peel. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, contact your doctor or hospital immediately.

You may have pain in your back, muscles, joints or bones. If this happens, tell your doctor so they can give you painkillers. Some people may also have muscle spasms. If you have these, ask your doctor for advice.

Some people have indigestion or pain in the tummy (abdomen) when taking ponatinib. If you have this, tell your doctor as they can give you drugs to help.

Tell your doctor straight away if you have:

• any signs of bleeding from the back passage (rectum)
• black stools (poo)
• blood in your vomit
• vomit that looks dark and grainy like coffee grounds. 

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• throbbing pain or swelling in a leg or arm
• reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
• suddenly feeling breathless or coughing.

Always call 999 if you have:

• chest pain
• difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

This treatment can cause your blood pressure to go up. Your doctor or nurse should check your blood pressure regularly during your treatment. Tell your doctor if you:

• have headaches
• have nosebleeds
• feel dizzy.

If you have high blood pressure, your doctor can give you tablets to control it. If you already take tablets for high blood pressure, tell your doctor before you start treatment.

This treatment can cause changes to the lungs. Tell your doctor, nurse or pharmacist if you develop: 

• a cough that does not go away
• wheezing
• breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

This treatment can raise your blood sugar levels. If you have a raised blood sugar level, you may:

• feel thirsty
• need to pass urine (pee) more often
• feel tired.

Tell your doctor or nurse if you have these symptoms.

If you have diabetes, your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this. You may need to change your insulin or tablet dose.

Ponatinib can make your blood vessels narrower. This may increase your risk of having a stroke. It is important to tell your doctor if you have had any strokes or heart problems in the past. Your doctor may talk to you about the benefits and risks of ponatinib. They may also talk to you about lifestyle changes. For example, they may advise you to follow a healthy diet or to stop smoking. These can lower the risk of having a stroke.

You can use the word “FAST” to remember the main symptoms of stroke.

Face:

• Your face droops on one side.
• You are unable to smile.
• Your mouth or eye may have drooped.

Arms:

• You are unable to lift both arms and keep them up because one side of your body is weak or numb.

Speech:

• You have difficulty speaking.
• Your speech is slurred or garbled.
• You are confused.

Time:

• If you notice any of these signs and symptoms, it’s time to dial 999 immediately.

Ponatinib may affect how your liver and kidneys work. Your doctor or nurse will take regular blood samples to check your liver and kidneys are working properly. If the treatment is affecting your liver, your doctor may change the dose of treatment you are having.

This treatment can affect how the heart works. You may have tests to check how well your heart is working. These may be done before, during and after treatment.

If the treatment is causing heart problems, your doctor may change the type of treatment you are having.

Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• breathlessness
• dizziness
• changes to your heartbeat
• swollen feet and ankles.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor. 

Always call 999 if you have:

• chest pain, pressure, heaviness, tightness or squeezing across the chest
• difficulty breathing.

Ponatinib can make your pancreas swell (pancreatitis). Tell your doctor straight away if you have both of these symptoms:

• you get a sharp pain in your upper tummy (abdomen)
• you are sick or vomit.

Your doctor will examine your tummy. They may give you drugs to help the symptoms. The doctor may also may change how much ponatinib you take.

This treatment may make your eyes:

• dry
• sore
• red
• inflamed.

If you have any of these symptoms, your doctor can give you eye drops to help.

If you have blurred vision or have any changes to your eyesight, contact your doctor straight away. Do not drive if your eyes are affected.

This treatment may cause headaches. If you have headaches, tell your doctor, nurse or pharmacist. They can give you advice about painkillers that may help. Tell them if the headache does not get better, or gets worse.

Ponatinib may cause dizziness. If this happens, tell your doctor or nurse. If you feel dizzy, you should not drive or operate machinery.

This treatment may cause fluid to build-up in your legs and arms. This can cause swelling (oedema). Always tell your doctor if you feel breathless or notice any swelling in your legs or arms. A build-up of fluid may be treated with drugs that make you pee more often (diuretics).

Ponatinib can make you dehydrated. Try to drink around 2 litres (3.5 pints) of fluids every day while having treatment.

Tell your doctor or nurse if you have signs of dehydration, such as:

• feeling thirsty
• having dark or strong-smelling urine (pee)
• dizziness
• dry mouth and eyes
• needing to pass urine less than 4 times a day.

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth or throat is sore:

• tell your nurse or doctor – they can give you a mouthwash or medicines to help
• try to drink plenty of fluids
• avoid alcohol, tobacco, and foods that irritate your mouth and throat.

This treatment can affect your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Ponatinib contains a small amount of lactose. If you have a lactose intolerance, talk to your doctor before you start taking this.

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

Some men may have difficulty getting or maintaining an erection while taking ponatinib. Talk with your doctor or nurse if you are worried about this.

Your doctor will advise you not to become pregnant or make someone pregnant while taking ponatinib. Ponatinib may harm a developing baby.

It is important to use effective contraception. Ponatinib may make the contraceptive pill less effective. People who take the contraceptive pill are advised to use another type of contraception along with the contraceptive pill. Talk to your doctor if you need more information about this.

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.