Ibrutinib

During treatment you usually see a blood cancer 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.

You will have regular blood tests during your treatment. This is to check that your blood cells are at a safe level to have treatment.

You will see a doctor or nurse regularly during your treatment. They will ask you how you have been feeling.

The nurse or pharmacist will give you the ibrutinib tablets to take home. You may be given tablets of different strengths.

You usually keep taking ibrutinib every day for as long as it keeps the cancer under control and any side effects can be managed.

Your nurse or pharmacist may also give you anti-sickness drugs and other medicines to take home. Take all your tablets exactly as they have been explained to you.

You take ibrutinib once a day. Try and take the tablets at the same time each day. Swallow the tablets whole with a glass of water. They should not be chewed or crushed. 

Always take ibrutinib exactly as your nurse or pharmacist explained. This is important to make sure it works as well as possible for you.

If you forget a dose, take the tablets as soon as possible on the same day. Take the next dose at the usual time the next day. Never take a double dose to make up for the one you missed.

Your doctor may ask you to stop taking ibrutinib or take a lower dose because of side effects. Always follow your doctor’s advice. 

Here are some other things to remember about your tablets:

• Do not have grapefruit or Seville oranges (bitter oranges) while you are taking ibrutinib. This includes eating these fruits, drinking the juice, or taking supplements that might contain them. These fruits can increase the amount of ibrutinib in your blood.
• Wash your hands after taking your tablets.
• Other people should avoid direct contact with the tablets. 
• Keep the tablets in the original package and at room temperature, away from heat and direct sunlight.
• Keep the tablets safe and out of the sight and reach of children. 
• If you are sick just after taking the tablets, contact the hospital. Do not take another dose.
• If your treatment is stopped, return any unused tablets to the pharmacist. 

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 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. Your doctor may give you antibiotics and other drugs to take during this treatment. These may help reduce your risk of getting an infection. 

But it is still 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.

Your white blood cell count will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.

You may be given a drug called G-CSF. This encourages the body to make more white blood cells. You have it as a small injection under the skin.

Ibrutinib can increase the risk of bleeding and reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you are taking any medicines that may affect bleeding. This includes aspirin, blood thinning tablets such as warfarin, or injections such as heparin or vitamin E.  
If you have a low number of platelets in your blood, you may bruise or bleed easily. You may have:

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

Tell your doctor if you have any unexplained bruising or bleeding. You may need a drip to give you extra platelets. This is called a platelet transfusion.

You should contact your doctor straight away if you have any heavy or unusual bleeding. This includes: 

• vomiting or coughing up blood
• unexpected vaginal bleeding
• blood in your urine (pee) or stools (poo)

If you need to have any surgery during treatment, your doctor may ask you to stop taking ibrutinib for a few days before and after your operation.

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. 

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 a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

Contact the hospital straight away on the 24-hour number, if:

• your mouth or throat is sore, or affecting how much fluid you can drink or food you can eat 
• your mouth, tongue, throat or lips have any blisters, ulcers or white patches. 

They can give you advice, and mouthwash or medicines to help with the pain or to treat any infection. Follow their advice and make sure you:

• drink plenty of fluids
• avoid alcohol and tobacco
• avoid food or drinks that irritate your mouth and throat.

You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor, nurse or pharmacist. They can give you painkillers and advice. They can also tell you if any of the painkillers you usually take are suitable. 

Tell them if the pain does not get better. Having warm baths and resting regularly may help. 

This treatment may cause headaches. If you have headaches, tell your doctor, nurse or pharmacist. They can give you advice about painkillers that may help. Tell them if the headache does not get better, or gets worse.

Ibrutinib may affect your skin. It may cause a rash, which might be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. 

Rarely, ibrutinib can cause severe skin reactions. If your skin becomes painful, or you develop a severe rash or blisters and feel unwell with flu-like symptoms such as a high temperature and joint pain, contact your hospital straight away. 

You may notice changes to your nails. They may become brittle and break easily. Wear gloves when washing dishes or using detergents to help protect your hands and nails. If the area around your nails becomes inflamed, tell your doctor straight away.

You may put on weight or your ankles and legs may swell because of fluid building up. Tell your doctor or nurse if you notice this. If your ankles and legs swell, it can help to put your legs up on a foot stool or cushion.

This treatment may affect the nerves in your fingers and toes. This can cause numbness, tingling or pain in your hands or feet. This is called peripheral neuropathy. You might find it hard to do fiddly tasks such as fastening buttons or tying shoelaces.

If you have these symptoms, always tell your doctor, nurse or pharmacist. They sometimes need to change the drug or the dose of the drug. The symptoms usually improve slowly after treatment ends. But for some people they continue and are a long-term side effect of treatment.

This treatment can affect how the heart works. You may have tests to check how well your heart is working. These may be done before, during and after treatment.

If the treatment is causing heart problems, your doctor may change the type of treatment you are having.

Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• breathlessness
• dizziness
• changes to your heartbeat
• swollen feet and ankles.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor. 

Always call 999 if you have:

• chest pain, pressure, heaviness, tightness or squeezing across the chest
• difficulty breathing.

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.

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.

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.

This drug contains lactose. If you have a lactose intolerance, talk to your doctor before you start taking this treatment.

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.

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

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.

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.