What is ponatinib (Iclusig®)?

Ponatinib (Iclusig®) can be used to treat some types of leukaemia, such as chronic myeloid leukaemia (CML). It is best to read this information with our general information about targeted therapies and the type of leukaemia you have.

Ponatinib belongs to a group of targeted therapy drugs known as tyrosine kinase inhibitors (TKIs). Kinases are proteins that control how cells in your body grow and divide. Ponatinib blocks (inhibits) the messages sent by the proteins (kinases) that make the 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.

When ponatinib is used

Ponatinib is used to treat Chronic myeloid leukaemia (CML). It is also used to treat Acute lymphoblastic leukaemia (ALL) that is Philadelphia chromosome positive. Ponatinib is used to treat these leukaemias where:

  • the leukaemia cells have a gene change (mutation) called T315I.
  • the leukaemia cells have no T315I gene change, but have been treated with other tyrosine kinase inhibitor drugs.

Ponatinib is also sometimes used to treat other types of cancer as part of a clinical trial.

How ponatinib is given

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.

Ponatinib can be taken as tablets, so you can take it at home. 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.

Taking ponatinib tablets

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. Speak to your doctor or pharmacist if you find this difficult.

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.

About side effects

We explain the most common side effects of this treatment here. We also include some less common side effects. You may get some of the side effects we mention, but you are unlikely to get all of them.

If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.

Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.

Serious and life-threatening side effects

Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.

Contact the hospital

Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

More information

We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.

Possible side effects

Risk of infection

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. If this happens, your doctor or nurse can advise you about how to lower your risk of infection.

Your doctor may ask you to stop taking your tablets for a short time, until your white blood cell numbers recover. They may also ask you to take a lower dose of ponatinib.

If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away if:

  • your temperature goes over 37.5°C (99.5° F)
  • you suddenly feel unwell, even with a normal temperature
  • you have symptoms of an infection.

Symptoms of an infection are:

  • feeling shaky or shivery
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine a lot.

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

Anaemia (low number of red blood cells)

This treatment can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Bruising and bleeding

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

This can sometimes cause bleeding problems, such as:

  • nosebleeds
  • bleeding gums
  • tiny red or purple (blood) spots or rashes on the skin
  • getting bruises more easily.

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

Contact your doctor right away if you have any:

  • unusual bleeding including vomiting or coughing up blood
  • unexpected vaginal bleeding
  • blood in your poo (stools)
  • blood in your urine.

Feeling tired

Feeling tired is a common side effect. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy. If you feel sleepy, do not drive or operate machinery.

Feeling sick

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. Take the drugs exactly as your nurse or pharmacist tells you.

Diarrhoea

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

If you have diarrhoea:

  • try to drink at least 2 litres (31/2 pints) of fluids each day
  • avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
  • contact the hospital for advice.

Constipation

This treatment can cause constipation. 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 for advice. Your doctor can give you drugs called laxatives to help.

Indigestion or tummy pain

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

Let your doctor know straight away if you have any signs of:

  • bleeding from the back passage
  • black poo (stools)
  • you are vomiting up blood
  • your vomit looks like coffee grounds. 

Skin changes

Ponatinib may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. Ponatinib can cause a rash, which may feel itchy. Always tell your doctor or nurse about any skin changes. They can give you advice and may give you creams or medicines to help.

Sometimes, ponatinib can cause severe skin reactions. Contact your doctor straight away if you have:

  • large blisters
  • peeling skin
  • sores in your mouth.

Muscle, joint, or bone pain

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.

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

  • pain, redness or swelling in a leg or arm
  • breathlessness
  • chest pain.

If you have any of these symptoms, contact a doctor straight away.

A blood clot is serious, but can be treated with drugs that thin the blood. Your doctor or nurse can give you more information.

Narrowing of blood vessels

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 your medical history and 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.

Contact your doctor straight away if you:

  • feel weak or numb in one side of your body
  • find it hard to speak.

Effects on the heart

This treatment can affect the way the heart works. You may have tests to see how well your heart is working. These may be done before, during, and sometimes after treatment. If the treatment is causing heart problems, your doctor can change the dose of treatment you are having.

Contact a doctor straight away if you:

  • have pain or tightness in your chest
  • feel breathless or dizzy
  • feel your heart is beating too fast or too slowly.

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

High blood pressure (hypertension)

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.

Effects on the lungs

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

  • a cough
  • wheezing
  • a fever (high temperature)
  • breathlessness.

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

Raised blood sugar levels

Ponatinib may raise your blood sugar levels. This may make you feel thirsty, tired, and make you pass urine more than usual. Tell your doctor or nurse if you have these symptoms.

Tell your doctor if you have diabetes as your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this. They may change your insulin or tablet dose.

Effect on eyes

Side effects of this treatment on your eyes can include:

  • dryness
  • soreness
  • redness
  • inflammation.

If you have any of these, 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.

Headaches

This treatment may cause headaches. If this happens, tell your doctor or nurse. They can give you painkillers.

Feeling dizzy

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

Fluid build-up (oedema)

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).

Dehydration

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.

Sore mouth

You may get a sore mouth or mouth ulcers. This can make you more likely to get a mouth infection.

Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth 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.

Loss of appetite

This treatment can affect your appetite. Do not worry if you do not eat much for a day or two. But if your appetite does not come back after a few days, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.

Less common side effects

Changes in the way the liver and kidney works

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

Hair loss

Ponatinib may cause your hair to thin. Talk to your nurse if you are worried about this.

Numb or tingling hands or feet (peripheral neuropathy)

Ponatinib can affect the nerves, which can cause numb, tingling or painful hands. This is called peripheral neuropathy. You may also find it hard to fasten buttons or do other fiddly tasks. Tell your doctor if you have these symptoms.

Thyroid changes

Ponatinib can affect your thyroid gland. You will have regular blood tests to check this.

Swollen pancreas (pancreatitis)

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.

Hepatitis B reactivation

If you had Hepatitis B (a liver infection) in the past, ponatinib can make it active again. Your doctor or nurse will talk to you about this and may test you for Hepatitis B before, during, and after treatment.

Tumour lysis syndrome (TLS)

Ponatinib may cause cancer cells to break down very quickly. This side effect is rare. If it happens, large amounts of uric acid (a waste product) may be released into your blood. Your kidneys usually get rid of uric acid, but may not be able to cope with large amounts. Too much uric acid can affect the heart and kidneys. Doctors call this tumour lysis syndrome (TLS).

Your doctor may give you drugs to lower the risk of TLS. You may also be given fluid through a drip to help protect your kidneys.

Other information

Other medicines

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

  • medicines you have been prescribed
  • medicines you buy in a shop or chemist
  • vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Lactose

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

Fertility

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. There may be ways to preserve fertility for men and women. If you are worried about fertility, it is important to talk with your doctor before you start treatment.

Erectile dysfunction

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.

Contraception

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

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

Breastfeeding

Women are advised not to breastfeed while having this treatment. This is because the drugs could be passed to the baby through breast milk.

Medical and dental treatment

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

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.

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