Nilotinib (Tasigna®)

Nilotinib comes as capsules, so you can take it at home. 

During your treatment, you usually see a:

• haematologist – this is a doctor who treats blood cancers
• cancer nurse or specialist nurse
• specialist pharmacist.

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

You will be given nilotinib as an outpatient. The nurse or pharmacist will give you the capsules to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for you. 

You will have regular blood tests during your treatment. A nurse or person trained to take blood (phlebotomist) will take the blood samples from you. This is to check that it is safe for you to have treatment.

You will speak to a doctor, nurse or pharmacist before you have nilotinib. 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 treatment.

You carry on taking nilotinib for as long as it is working for you and the side effects can be managed. It is important that you do not stop taking it without talking to your doctor.

You usually take nilotinib capsules twice a day with 12 hours between each dose. Take them at the same time every day.

It is important you do not eat for 2 hours before and for 1 hour after taking nilotinib, as this can increase side effects.

Nilotinib should be swallowed whole with a glass of water. If you cannot swallow capsules, you can mix the contents with a teaspoon of apple sauce. Talk to your pharmacist about this. Do not use more than 1 teaspoon per capsule and take it straight away. Nilotinib can only be mixed with apple sauce – no other foods must be used.

Other things to remember about your capsules:

• If you forget to take your capsules, do not take a double dose. Take your next dose at the usual time and tell your doctor or nurse.
• If you are sick just after taking the capsules, contact the hospital. Do not take another dose.
• Wash your hands after taking the capsules.
• Other people should avoid direct contact with nilotinib capsules.
• Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
• Keep them safe, somewhere children cannot see or reach them.
• If your treatment is stopped, return any unused capsules to the pharmacist.

It is also important that you do not drink grapefruit juice or eat grapefruit at any time while you are taking nilotinib, as this can increase side effects.

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

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 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.

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 affect your skin. Skin changes can include:

• dryness
• rashes
• itching 
• acne
• sweating more.

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.

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

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. They may change your anti-sickness treatment. Let them know if you still feel sick.

This treatment may cause headaches. If you have headaches, tell your doctor. They may give you painkillers to help.

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.

You may get pain in your tummy (abdomen) or have indigestion. Your doctor can give you drugs to help improve these symptoms. Tell them if the pain gets worse or does not get better.

Sometimes these problems can be more serious. Contact your doctor straight away if you have severe pain, blood in your stools (poo) or a fever.

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 might notice that your hair slowly gets thinner. But you are very unlikely to lose all the hair from your head. Your hair can also become more brittle. Your nurse can give you information about coping with hair loss. Your hair will usually go back to normal after treatment ends.

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 the level of cholesterol. This is a fatty substance in the blood. You may have a blood test to check the level of cholesterol. Your doctor may refer you to a dietitian for advice on diet, or prescribe medicines to control your cholesterol levels.

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.

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.

This drug contains a small amount of lactose. Lactose is a type of sugar mainly found in milk and dairy products. If you have a lactose intolerance, talk to your doctor before you start this treatment.

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.

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 2 weeks after treatment finishes. This is because the drugs could be passed to the baby through breast milk.

Your doctor or nurse 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.