Ponatinib

Ponatinib comes in tablets. This means you can take it at home.

You may have it with other cancer drugs.

During a course of treatment, you will meet someone from your cancer team, such as a:

• cancer doctor (haematologist)
• specialist nurse
• specialist pharmacist. 

This is who we mean when we mention doctor, nurse or pharmacist in this information.

During your course of treatment, you will have regular blood tests. This is to check that it is safe for you to have treatment. Before starting treatment, your doctor will also check how well your heart is working.

You will meet with a doctor, nurse or pharmacist before you have treatment. They will talk to you about your blood results and ask how you have been feeling. If your blood results are okay, the pharmacy team will prepare your targeted therapy. 

You usually take ponatinib for as long as it is working for you and side effects can be managed. Your cancer team will discuss your treatment plan with you.

Your cancer team may also give you anti-sickness drugs and other medicines to take home. Take these exactly as they tell you to.

You take ponatinib once a day. Your cancer team will give you the ponatinib tablets to take home. They may give you tablets of different strengths. Always take the tablets exactly as explained. This is important to make sure they work as well as possible for you.

Make sure you:

• swallow them whole with a glass of water 
• do not chew, break or crush them
• take them at the same time every day.   

If you forget to take the tablets, do not take a double dose. Take the next dose at the usual time. 

Other things to remember about your tablets:

• Do not eat or drink grapefruit juice while you are taking ponatinib.
• Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
• Keep them safe, where children cannot see or reach them.
• If you are sick (vomit) just after taking them, do not take an extra dose. Take your next dose at the usual time.
• Do not throw away unused tablets. Return them to your cancer team at the hospital.

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 reduce 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. You may have:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

Feeling tired is a common side effect of this treatment. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired.

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

You may feel sick during this treatment, but this is usually mild. Your doctor, nurse or pharmacist may prescribe you anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to. If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids.

If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice.

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. 

You may get pain in your tummy (abdomen), or have indigestion.  Your doctor, nurse or pharmacist can give you advice or treatment to help.

Contact the hospital straight away on the 24-hour number if you have:

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

This treatment can affect your skin. It might feel dry. You may develop a rash, which may be itchy. Always tell your doctor, nurse or pharmacist about any skin changes. They can give you advice or prescribe creams or medicines to help

If your skin feels dry, try using soap-free cleansers and unperfumed moisturising cream every day.

Rarely, this treatment can cause a serious skin reaction that needs to be treated immediately in hospital.

Do not take any more of this treatment and contact the hospital straight away on the 24-hour number if you have any of these symptoms:

• a skin rash that is spreading
• blistering or peeling skin
• flu-like symptoms, such as a high temperature and joint pain
• sores on your lips or in your mouth.

You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor, nurse or pharmacist. They can give you painkillers and advice. They can also tell you if any of the painkillers you usually take are suitable. 

Tell them if the pain does not get better. Having warm baths and resting regularly may help. 

This treatment can cause your blood pressure to go up. You will have regular blood pressure checks during your treatment. Tell your doctor, nurse or pharmacist if you:

• have headaches
• have nosebleeds
• feel dizzy.

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

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.

This treatment can affect how the liver works. You will have regular blood tests to check this. Sometimes liver changes can be serious. Contact the hospital straight away on the 24-hour number if you have any of these symptoms:

• yellow skin or eyes
• feeling very sleepy
• dark urine (pee)
• unexplained bleeding or bruising
• pain in the right side of your tummy (abdomen).

If you have black or brown skin, changes in your skin colour may be less noticeable. You might first notice the whites of your eyes look yellow, or that the colour of your urine has changed.

This treatment can raise the level of triglycerides and cholesterol. These are fatty substances in the blood. You may have a blood test to check the levels of triglycerides and cholesterol. Your doctor may refer you to a dietician for advice on diet or prescribe medicines to help.

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 can cause a build-up of fluid in the body. Contact the hospital on the 24-hour number if you:

• are gaining weight 
• have swelling in your face, legs or ankles.

They can give you advice and treatment to help.

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.

This treatment may affect the nerves in your fingers and toes. This can cause numbness, tingling or pain in your hands or feet. This is called peripheral neuropathy. You might find it hard to do fiddly tasks such as fastening buttons or tying shoelaces.

If you have these symptoms, always tell your doctor, nurse or pharmacist. They sometimes need to change the dose of the drug. 

If you have had a liver infection called hepatitis B, this treatment can make it active again. Your doctor, nurse or pharmacist will talk to you about this. You may have tests for hepatitis B before, during, and after treatment.

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.

Cancer doctors usually recommend that people with cancer have vaccinations for flu and coronavirus (covid). They may also recommend other vaccines, such as Shingrix^® for shingles. These all help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

You should not have live vaccines if your immune system is weak. This includes if you are having or recently had chemotherapy, radiotherapy or other cancer treatments that affect your immune system. Live vaccines can make you unwell because they contain a very weak version of the illness they protect you against. There are several live vaccines, including 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.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

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.

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.

This treatment contains lactose. If you have a lactose allergy or intolerance, ask your doctor, nurse or pharmacist for 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.