Nilotinib (Tasigna ®)
Nilotinib (Tasigna ®) is a targeted therapy used to treat some people with chronic myeloid leukaemia (CML).
It’s best to read this information with our general information about CML. During treatment, you will see a cancer doctor and a cancer nurse. This is who we mean when we mention doctor or nurse in this information.
Nilotinib works by blocking signals within the leukaemia cells that make them grow. Blocking the signals causes the cells to die.
When nilotinib is used
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Nilotinib is a treatment for people with Philadelphia chromosome positive chronic myeloid leukaemia (Ph+ CML).
It can be used as the first treatment for people with CML in the chronic phase. In this phase, the CML develops very slowly and is often stable for a long time. It’s sometimes called the ‘stable phase’.
Nilotinib can also be used to treat CML if imatinib (Glivec ®) is no longer working or is causing severe side effects.
Nilotinib may only be available through the NHS in some situations. Your cancer doctor can tell you if it's appropriate for you. Some people may be given it as part of a clinical trial.
If a drug isn’t available on the NHS, there may be different ways you are still able to have it. Your cancer doctor can give you advice. We have further information on what to do if a treatment isn’t available.
Always take your capsules exactly as your nurse or pharmacist explained. This is important to make sure they work as well as possible for you.
Nilotinib is usually taken twice a day, with 12 hours between each dose. Taking your capsules at the same time each day will help you remember when to take them.
You take the capsules on an empty stomach with a large glass of water. It’s important you don’t eat for two hours before or for one hour after taking nilotinib, as this can increase side effects.
If you have trouble swallowing capsules, the contents of each capsule can be mixed with a teaspoon of pureed apple and taken immediately. It’s important you don’t use more than one teaspoon of apple puree per capsule. Don’t use any food other than apple puree.
It’s also important that you don’t drink grapefruit juice or eat grapefruit at any time while you're taking nilotinib, as this can increase side effects.
There are some important things to remember when taking your capsules:
If you forget to take your capsules, take them as soon as you remember. If it’s nearly time for your next dose, forget about the missed one and carry on as normal. Don’t take a double dose.
Keep the capsules in the original package.
Keep them safe and out of the reach of children.
Get a new prescription before you run out of capsules and make sure you have plenty for holidays.
Return any unused capsules to the pharmacist if your treatment is stopped.
If you are sick just after taking the capsules, contact the hospital. You may need to take another dose.
Nilotinib is a long-term treatment and you should carry on taking it for as long as your specialist doctor (haematologist) tells you. You'll have regular blood tests to check how well it’s working for you.
Possible side effects of nilotinib
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The side effects of nilotinib are generally mild or moderate and usually go away after a few days or weeks of taking the treatment.
We have included the most common likely side effects of nilotinib here. We haven’t included all the less common and rarer side effects. You may get some of the side effects we mention, but you will not get them all.
Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained. This will help the drugs work as well as possible for you.
Your nurse will give you advice about managing side effects. After your treatment is over, side effects will start to improve. Always tell your doctor or nurse about the side effects you have.
Serious and life-threatening side effects
Sometimes cancer drugs can result in very severe side effects, which rarely may be life-threatening. Your cancer doctor and nurse can explain the risk of these side effects to you.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.
More information about this drug
We’re not able to list every side effect for this treatment here, particularly the rarer ones. For more detailed information you can visit the electronic Medicines Compendium (eMC).
Common side effects of nilotinib
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These side effects may affect more than 1 in 10 people (more than 10%).
Effects on blood cells
Nilotinib can reduce the number of blood cells in your blood. You will have regular blood tests done to check your blood cell levels. If the number of white blood cells, or blood-clotting cells (platelets), gets too low your doctor may ask you to stop taking nilotinib for a short time until your blood cell numbers improve.
Risk of infection
If you have a low number of white blood cells, you are more likely to get an infection. Contact the hospital straight away if:
your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F) depending on the advice given by your healthcare team
you suddenly feel unwell, even with a normal temperature
you have symptoms of an infection – this can include feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot.
Bruising and bleeding
Tell your doctor if you have any bruising or bleeding you can’t explain. This includes:
rashes on the skin.
Anaemia (low number of red blood cells)
Nilotinib can reduce the number of red blood cells in your blood. 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. You may need to have a blood transfusion if your number of red blood cells becomes too low.
You may develop a rash and your skin may become dry and itchy. Your doctor can prescribe medicine or creams to help with this.
Feeling sick or being sick
If this happens, it is usually mild. Your doctor can prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. If you still feel sick or are being sick (vomiting), tell your doctor. They can prescribe other anti-sickness drugs that may work better for you.
Some people find that nilotinib causes headaches. Let your doctor or nurse know if this happens to you. They can give you painkillers to relieve it.
If you feel more tired than usual, try to pace yourself and get as much rest as you need. It can help to balance this by doing some gentle exercise, such as short walks.
Tummy (abdominal) pain
Some people have pain or discomfort in their tummy when taking nilotinib. Tell your specialist doctor or nurse if you have this.
Muscle, joint or bone pain
Muscle pain is a common side effect of nilotinib. Less commonly it can cause joint or bone pain. Your doctor can prescribe painkillers to ease pain. Nilotinib can also cause muscle spasms in some people. Ask your doctor for advice is this is a problem for you.
You may notice your hair becomes thinner during treatment. This is usually temporary and hair grows back when you stop taking the capsules. We have information on coping with hair loss.
Increases in cholesterol
Nilotinib can increase cholesterol levels in the blood. You may have blood tests to check your cholesterol levels before and during treatment with nilotinib.
Changes to the levels of minerals in your blood
Nilotinib can affect the levels of some of the minerals in your blood. This is usually mild and doesn’t cause symptoms. You will have regular blood tests to check your mineral levels.
Less common and rare side effects of nilotinib
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These side effects affect fewer than 1 in 10 people (under 10%).
This can usually be controlled with medicine, but tell your doctor if it's severe or continues. It's important to drink plenty of fluids if you have diarrhoea.
You may get constipated. This can usually be helped by drinking plenty of fluids, eating more fibre in your diet and doing some gentle exercise. You may need to take medicine (laxatives) to help. Your doctor can prescribe these or you can buy them at a pharmacy.
Loss of appetite
If your appetite is affected, try to eat smaller meals more often. If you’re finding it difficult to eat enough, ask to speak to a nurse or dietitian. They can give you advice on getting more calories and protein in your diet. They may give you food supplements or meal replacement drinks to try. Your doctor can prescribe some of these and you can buy them from chemists.
Some people have indigestion when taking nilotinib. Tell your doctor if you are affected. They can give you treatment to help.
Nilotinib can affect sleep in some people. Tell your doctor if you are having difficulty sleeping.
Tumour lysis syndrome
Rarely, nilotinib may cause the cancer cells to break down very quickly and release uric acid (a waste product) into the blood. The kidneys usually get rid of uric acid but may not be able cope with large amounts. This can cause chemical imbalances in the blood that affect the kidneys and the heart. Doctors call this tumour lysis syndrome (TLS).
People who have a higher risk of TLS may be given extra fluids and tablets called allopurinol (Zyloric ®), or a drug called rasburicase (Fasturtec ®) through a drip before they start treatment.
Changes in mood
Sometimes nilotinib can cause mood changes such as depression or anxiety. If you feel depressed or anxious, or have other changes to your mood, tell your doctor.
Nilotinib may cause dizziness. Tell your doctor or nurse if this is a problem. Don’t drive or operate machinery if you feel dizzy.
Your eyes may become dry, red or itchy. If this happens, tell your doctor. They may prescribe eye drops to help.
Nilotinib can sometimes cause swelling in the ankles or around the eyes. Sometimes fluid may build up in the lining of the lungs. This is known as pleural effusion. Rarely, fluid collects in the lining around the heart.
A build-up of fluid may be treated with steroid tablets or with drugs that make you pass more urine (diuretics). Sometimes doctors may ask you to stop nilotinib for a few days, until the fluid goes away.
Always tell your doctor if you develop swelling. It’s important to contact your doctor or your hospital straight away if you develop a cough, chest pain, feel more breathless than usual or if you gain weight suddenly.
Changes in the way your liver or kidneys work
Nilotinib can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment.
You will have blood tests before and during treatment to check how well your kidneys and liver are working.
Tell your doctor if you are taking any other medicines you’ve been told could affect your liver.
Changes to the heart
You may have a tracing taken of your heartbeat (electrocardiograph ECG) before starting nilotinib.
Always tell your doctor if you have had any heart problems in the past. It’s also important to tell them if you are taking medicines for your heart or blood pressure, especially if they can affect your heartbeat.
A small number of people may develop a change in their heart rhythm while taking nilotinib. Heartbeats may become less regular or the heart may feel as if it's beating too fast. If you notice any changes in your heart rhythm, feel faint or dizzy, or have chest pain, tell a doctor straight away.
Increased blood pressure
Nilotinib can cause high blood pressure in some people. If you already have high blood pressure and are on treatment to control it, tell your doctor. You may need to have regular blood pressure checks. This is to make sure your blood pressure remains well controlled during treatment with nilotinib.
Raised blood sugar levels
Some people may develop raised blood sugar levels while taking nilotinib. You will have regular blood tests to check your sugar levels while having this treatment.
It’s also important to let your doctor know immediately if you feel unwell or have any severe side effects, even if they’re not mentioned above.
Other information about nilotinib
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Some medicines, including those that you can buy in a shop or chemist, can be harmful to take when you are having nilotinib. Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.
It’s not known how nilotinib may affect fertility. It's important to discuss fertility with your doctor before starting treatment.
Your doctor will advise you not to become pregnant while taking nilotinib, because it may harm the developing baby. For women who could become pregnant, it’s important to use effective contraception while taking this drug, and for two weeks after stopping treatment. You can discuss this with your doctor or nurse.
Women are advised not to breastfeed during treatment and for a few months after. This is in case there is nilotinib in their breast milk.
If you’re admitted to hospital for a reason not related to cancer, it’s important to tell the doctors and nurses looking after you that you are having nilotinib treatment.
You should tell them the name of your cancer specialist so that they can ask for advice.
This page has been compiled using information from a number of reliable sources, including the electronic Medicines Compendium (eMC; medicines.org.uk). If you’d like further information on the sources we use, please feel free to contact us.
This information was reviewed by a medical professional.
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