It is best to read this information with our general information about the type of cancer you have.
Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.
Most people who have CML have a genetic change in the leukaemia cells This change creates an abnormal gene called the BCR-ABL-1 gene. The BCR-ABL-1 gene has an abnormal chromosome, called the Philadelphia chromosome.
When you are diagnosed with CML, your blood and bone marrow samples are tested for the BCR-ABL-1 gene. Nilotinib can be used for people with CML who have this gene and the Philadelphia chromosome.
The BCR-ABL1 gene makes high levels of a substance called tyrosine kinase (TK). Tyrosine kinase stimulates leukaemia cells to grow and divide. Nilotinib works by switching off (inhibiting) tyrosine kinase. This causes the leukaemia cells to die.
How nilotinib is given
You have nilotinib as a capsule, which you can take at home.
You will be given nilotiniib as an outpatient. The nurse or pharmacist will give you the tablets to take home.
During treatment you usually see a leukaemia doctor (haematologist), 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.
Nilotinib can reduce the number of blood cells in your blood. You will have regular blood tests during treatment to check this. A nurse or person trained to take blood (phlebotomist) will take the blood samples from you. This is to check that your blood test results are at a safe level to continue treatment. If they are not, your treatment may be delayed for a short while, to let blood cells levels to recover.
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.
Taking nilotinib capsules
Always take your capsules exactly as your doctor, nurse or pharmacist explains. This is important to make sure they work as well as possible for you.
You usually take the capsules 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 2 hours before or for 1 hour after taking nilotinib, as this can increase side effects.
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 one teaspoon per capsule and take it straight away. Nilotinib can only be mixed with apple sauce and no other foods must be used.
Other important things to remember when taking 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 your capsules.
- Keep them safe and out of sight and reach of children.
- Other people should avoid direct contact with nilotinib capsules.
- Keep them in the original package and at room temperature, away from heat and direct sunlight.
- It is important to get a new prescription before you run out of capsules and make sure you have plenty for holidays.
- If your treatment is stopped, return any unused capsules to the pharmacist.
Grapefruit and grapefruit juice
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.
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.
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.
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. A low white blood cell count is sometimes 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. Contact the hospital straight away on the 24-hour contact number you have been given 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
- your temperature goes below 36°C (96.8°F).
Symptoms of an infection include:
- feeling shivery and shaking
- a sore throat
- a cough
- needing to pass urine (pee) a lot, 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 needed, your doctor may reduce or delay your treatment for a short time, until your cell count increases.
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:
- 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. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may have symptoms such as:
- pale skin
- lack of energy
- feeling breathless
- feeling dizzy and light-headed.
Tell your doctor or nurse if you have these symptoms.
If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.
You may develop a rash and your skin may become dry and itchy. Your doctor can prescribe medicine or creams to help.
Tell your doctor if a rash gets worse or does not improve.
Your doctor can give you anti-sickness drugs to help prevent or control sickness. If you still feel sick, tell your doctor. They can prescribe other anti-sickness drugs that may work better for you.
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 enough 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
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 (3½ pints) of fluids each day
- avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods
- contact the hospital for advice.
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 for advice. Your doctor can give you drugs called laxatives to help.
Muscle, joint or bone pain
Raised cholesterol level
This treatment can raise the level of cholesterol (a fatty substance) in the blood. You may have a blood test to check the level of cholesterol. Your doctor may give you medicines to control your cholesterol levels.
Effects on the lungs
This treatment can cause changes to the lungs. Tell your doctor if you develop:
- a cough
You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.
Loss of appetite
If you lose your appetite during this treatment, try to eat smaller meals more often. If you find it difficult to eat enough, ask to speak to a nurse or dietitian. They can suggest how to build up your diet. They may give you food supplement drinks to try. Your doctor can prescribe these and you can buy them from chemists.
Raised levels of uric acid (tumour lysis syndrome)
Rarely, nilotinib may cause the cancer cells to break down very quickly. This releases a waste product into the blood called uric acid. The kidneys usually get rid of uric acid but may not be able to cope with large amounts. Too much uric acid can cause swelling and pain in the joints. This is called gout. It may also cause other effects such as:
- kidney problems
- an abnormal heartbeat
- seizures, although these are rare.
This is called tumour lysis syndrome (TLS). People who have a higher risk of TLS may be given extra fluids and drugs to help prevent TLS before they start treatment. Drinking at least 2 litres (3½ pints) of fluids a day will also help. You will have regular blood tests to check the uric acid levels.
Changes in mood and problems sleeping
Numb or tingling hands or feet (peripheral neuropathy)
This treatment may affect the nerves, which can cause numb, tingling or painful hands or feet. You may find it hard to fasten buttons or do other fiddly tasks.
Tell your doctor if you have these symptoms or if you are worried about this. They sometimes need to lower the dose of the drug.
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 is important to contact your doctor or your hospital straight away if you develop any of the following:
- a cough
- chest pain
- feeling more breathless than usual
- gaining 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.
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.
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.
- notice any changes to your heart rhythm.
Other conditions can cause these symptoms, but it is important to get them checked by 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.
Raised blood sugar levels
This treatment may raise your blood sugar levels. You will have regular blood tests to check this. Symptoms of raised blood sugar include:
- feeling thirsty
- needing to pass urine (pee) more often
- feeling tired.
Tell your doctor or nurse if you have these symptoms during treatment or after it finishes.
If you have diabetes, your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this.
Blood clot risk
Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:
- throbbing pain, redness or swelling in a leg or arm
- suddenly feeling breathless or coughing
- sharp chest pain, which may be worse when you cough or take a deep breath.
If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.
A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.You can help reduce the risk of developing a blood clot by:
- staying active during treatment
- drinking plenty of fluids, especially water.
You may be given anticoagulants to help prevent a clot.
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.
If you have had a liver infection called Hepatitis B in the past, nilotinib can make it active again. Your doctor or nurse will talk to you about this and test you for Hepatitis B.
This drug contains a small amount of lactose. Lactose is a type of sugar found in milk and dairy products. If you have a lactose intolerance, talk to your doctor.
If you have sex while having this treatment, you need to use a condom. This is to protect your partner in case there is any nilotinib in the semen or vaginal fluids.
Your doctor will advise you not to get pregnant while taking nilotinib. It may harm a developing baby.
For women who could become pregnant, it is important to use effective contraception while taking this drug, and for 2 weeks after stopping treatment. You can discuss this with your doctor or nurse.
You are advised not to breastfeed while having this treatment, or for some time 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.
Medical and dental treatment
If you need medical treatment for any reason other than cancer, always tell the doctors and nurses 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.
Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.
Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.
If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines, such as shingles, contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.