Nilotinib is a type of targeted therapy drug called a cancer growth inhibitor.
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 gene change in the leukaemia cells. This gene change is called the Philadelphia (Ph) chromosome. When you are diagnosed with CML, your blood and bone marrow samples are tested for this change.
The gene change means that the leukaemia cells make high levels of a chemical that tells cells to develop and divide. This makes the leukaemia cells grow and divide in an uncontrolled way. Nilotinib blocks this chemical. This makes the leukaemia cells die.
How nilotinib is given
Nilotinib comes in capsules, so you can take it at 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 is a long-term treatment. You should carry on taking it for as long as your doctor tells you.
Nilotinib can reduce the number of blood cells in your blood. You will have regular blood tests to check your blood cell levels during treatment. If your levels get too low your doctor may tell you to stop taking nilotinib to let them recover.
Taking nilotinib capsules
Always take your capsules exactly as your doctor, nurse or pharmacist explained. 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 puree or apple sauce. Talk to your pharmacist about this. Do not use more than one teaspoon per capsule and take it straight away.
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.
There are some 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, tell your doctor as you may need to take another dose. Do not take another dose without telling your doctor first.
- Keep them in the original package and at room temperature, away from heat and direct sunlight.
- Keep them safe and out of sight and 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.
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 called neutropenia.
If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have 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 include:
- feeling shivery
- a sore throat
- a cough
- needing to pass urine often.
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 reduce or delay your treatment for a short time.
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. 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.
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 this happens, tell your doctor or nurse. They can give you painkillers.
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
Muscle, joint or bone pain
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.
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. 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.
Tumour lysis syndrome
Rarely, nilotinib may cause the cancer cells to break down very quickly. This releases uric acid (a waste product) into the blood. The kidneys usually get rid of uric acid but may not be able to 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 drugs to help prevent TLS 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.
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.
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. This is to make sure your blood pressure is controlled well during treatment with nilotinib.
Raised blood sugar
Some people may develop raised blood sugar levels while having this treatment. You will have regular blood tests to check your sugar levels while having this treatment.
Some medicines can affect nilotinib or be harmful when you are having it. This includes medicines you can buy in a shop or chemist.
Tell your cancer doctor about any drugs you are taking, including vitamins, herbal drugs and complementary therapies.
If you have had Hepatitis B (a liver infection) 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 treatment contains lactose. If you have an intolerance to some sugars, talk to your doctor before taking this treatment.
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.
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.