Nilotinib (Tasigna®)

Nilotinib is a targeted therapy drug used to treat some people with chronic myeloid leukaemia (CML). It is best to read this information with our general information about the type of cancer you have.

Nilotinib is given as tablets. You usually have it as an outpatient. Your cancer doctor or nurse will tell you how often you will have it.

Like all targeted therapy drugs, nilotinib can cause side effects. Some of the side effects can be serious, so it’s important to read the detailed information below. How targeted therapy affects people varies from person to person. Your healthcare team can talk to you more about this and give you advice on how to manage any side effects.

Tell your doctor or nurse straight away if you:

  • have a temperature
  • feel unwell
  • have severe side effects, including any we don’t mention here.

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

If you need medical attention for any reason other than cancer, always tell the healthcare staff that you are having this treatment.

What is nilotinib?

Nilotinib (Tasigna®) is a targeted therapy drug. It is used to treat some people with chronic myeloid leukaemia (CML).

During treatment, you will see a doctor who specialises in blood problems (haematologist) and a specialist nurse. This is who we mean when we mention doctor or nurse in this information.


How nilotinib works

Nilotinib works by blocking signals within the leukaemia cells that make them grow. Blocking the signals causes the cells to die.

How targeted therapies work

This animation shows how targeted therapies work and what effect they have on the body.

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How targeted therapies work

This animation shows how targeted therapies work and what effect they have on the body.

About our cancer information videos


When nilotinib is used

Most people who have CML have a change in the leukaemia cells called the Philadelphia chromosome. This is called Philadelphia chromosome positive chronic myeloid leukaemia (Ph+ CML). Nilotinib is a treatment for Ph+ CML.

Nilotinib can be used as the first treatment for people with CML in the chronic phase (sometimes called the ‘stable phase’). This is when CML develops very slowly and is often stable for a long time.

It is also sometimes used if another targeted therapy drug called imatinib is no longer working or causing severe side effects.

Nilotinib may only be available through the NHS in some situations. Your cancer doctor can tell you if it is 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.


How to take nilotinib

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. Swallow them whole with a large glass of water. It is important you do not eat for two hours before or for one hour after taking nilotinib, as this can increase side effects.

If you have trouble swallowing capsules you can mix the contents with a teaspoon of apple puree or apple sauce. Talk to your pharmacist about this. Don’t use more than one teaspoon per capsule and take it straight away.

It’s also important that you do not 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, do not take a double dose. Keep to your regular schedule and let your doctor or nurse know.
  • 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 will have regular blood tests to check how well it is working.


Possible 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 here, but you will not get them all. Always tell your doctor or nurse about any side effects you have.

If you have other cancer drugs along with this treatment, some side effects may be worse. You may also have side effects not listed here. We have more information about chemotherapy and radiotherapy.

If a side effect is more severe, your doctors may need to reduce the dose, or stop the treatment for a short time. Some people may have this treatment stopped completely.

Your doctor can give you 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. Most side effects start to improve after treatment has finished.

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.


Common side effects

Effects on blood cells

This treatment can reduce the number of blood cells in your blood. You will have regular blood tests to check your blood cell levels. If the number of white blood cells, or blood-clotting cells (platelets), gets too low, your doctor may delay your treatment until the levels improve.

Risk of infection

If your number of white blood cells is low, you are more likely to get an infection.

Contact the hospital straight away if:

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

Symptoms of an infection include:

  • feeling shivery
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine often.

Bruising and bleeding

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor or nurse if you have any bruising or bleeding that you can’t explain. This includes:

  • nosebleeds
  • bleeding gums
  • tiny red or purple spots on the skin that may look like a rash.

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 blood cells. This is called a blood transfusion.

Skin changes

You may develop a rash and your skin may become dry and itchy. Your doctor can prescribe medicine or creams to help.

Feeling sick

Your doctor can give you anti-sickness drugs to help prevent or control sickness. If you still feel sick, contact the hospital as soon as possible. They can give you advice or change the anti-sickness drug to one that works better for you.

Headaches

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

Feeling tired

Feeling tired is a common side effect. 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.

Tummy (abdominal) pain

Some people have pain or discomfort in their tummy when having this treatment. 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 help. Nilotinib can also cause muscle spasms in some people. Ask your doctor for advice if this is a problem for you.

Hair thinning

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.

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In these videos, people with experience of cancer and hair loss share their stories. You can also watch tutorials on wigs, headwear and eye make up.

Watch our hair loss video playlist

In these videos, people with experience of cancer and hair loss share their stories. You can also watch tutorials on wigs, headwear and eye make up.


Less common and rare side effects

Diarrhoea

If you have diarrhoea, contact the hospital for advice. Try to drink at least 2 litres (3½ pints) of fluids every day. It can help to avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.

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.

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.

Indigestion

Some people have indigestion when taking nilotinib. Tell your doctor if you get indigestion. They can give you treatment to help. Some of these medicines can affect the way the nilotinib works, so your doctor will explain when is best to take them.

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 and problems sleeping

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

Feeling dizzy

This treatment may cause dizziness. Tell your doctor or nurse if this is a problem. Don’t drive or operate machinery if you feel dizzy.

Eye problems

Your eyes may become dry, red or itchy. If this happens, tell your doctor. They may prescribe eye drops to help.

Fluid build-up

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

This treatment can affect how your kidneys and liver work. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your kidneys and liver are working.

Changes to the heart

You may have a tracing taken of your heartbeat, called an 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 any medicines for your heart or blood pressure.

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

This treatment can cause high blood pressure. You will have your blood pressure checked regularly. If you have headaches, nosebleeds or feel dizzy, let your doctor know. They can prescribe tablets to control high blood pressure.

If you have high blood pressure before you start treatment, your doctor will monitor you closely during treatment.

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.

Hepatitis B reactivation

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


Other information

Other drugs

Some medicines, including ones you buy in a shop or chemist, can be harmful while you are having this treatment. Tell your cancer doctor about any medicines you are taking, including vitamins, herbal drugs and complementary therapies.

This treatment contains a small amount of lactose. If you have a lactose intolerance, talk to your doctor before you start the treatment.

Fertility

Doctors don’t yet know how this treatment may affect your fertility (the ability to become pregnant or father a child). If you are worried about this, talk to you doctor before treatment starts.

Contraception

Your doctor will advise you not to get pregnant or father a child while having this treatment and for some time afterwards. The drugs may harm the developing baby. It is important to use effective contraception.

Breastfeeding

Women are advised not to breastfeed while having this treatment and for some time afterwards. 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 this treatment.