Ibrutinib and venetoclax

Ibrutinib and venetoclax both come in tablets. This means you can take them at home.

During a course of treatment, you will meet someone from your cancer team, such as a:

• cancer doctor
• specialist nurse
• specialist pharmacist.

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

During your course of treatment, you will have regular blood tests. This is to check that it is safe for you to have treatment.

Your cancer team will discuss your treatment plan with you. They may give you a copy of the treatment plan to take home.

They will give you the tablets to take home. They may give you tablets of different strengths. Always take the tablets exactly as your cancer team tell you to. This is important to make sure they work as well as possible for you.

Your cancer team may also give you anti-sickness drugs and other medicines to take home. Take all your capsules or tablets exactly as they tell you to.

During this treatment, you should avoid grapefruit, star fruit (carambola) and Seville oranges. This is because they can affect how ibrutinib and venetoclax work. You should avoid:

• drinking the juice of these fruits
• eating food that contains them
• taking supplements that might contain them.

For the first 12 weeks of this treatment, you take ibrutinib only.

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. Do not chew, crush or break them. 

If you forget a dose of ibrutinib, 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, nurse or pharmacist may ask you to stop taking ibrutinib or take a lower dose because of side effects. Always follow their advice.

From week 13 you take ibrutinib and you take venetoclax.

Venetoclax can cause a side effect called tumour lysis syndrome (TLS). There is more information about possible symptoms of TLS below. 

To reduce the risk of TLS, you start on a low dose of venetoclax and the dose is gradually increased. During this time, your cancer team will monitor you closely with blood tests after each dose.

You usually take venetoclax in the morning then have the blood tests in a day unit or clinic as an outpatient. Some people may need to stay in hospital during this time. Your cancer team will tell you when your blood will be checked.

Your cancer team will also give you more information about the following ways to prevent TLS:

• drinking plenty of water 2 days before you start venetoclax and every day while the dose is increased
• having extra fluids through a drip when you start venetoclax or when the dose is increased
• taking tablets called allopurinol or having a drip with a drug called rasburicase. These drugs reduce the amount of uric acid in the blood. This is a waste product that causes TLS.

You take venetoclax tablets once a day. Take them with or after food. Swallow them whole with a glass of water. Do not chew, break or crush them. Take them at the same time every day.

If you forget a dose of venetoclax, you can take the missed dose up to 8 hours late. If you miss a dose by more than 8 hours, take the next dose at the usual time. Never take a double dose.

Your doctor, nurse or pharmacist may ask you to stop taking venetoclax because of side effects. Always follow their advice.

• Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
• Keep them safe, where children cannot see or reach them.
• If you are sick (vomit) just after taking them, do not take an extra dose. Take your next dose at the usual time.
• Do not throw away unused tablets. Return them to your cancer team at the hospital.

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.

Ibrutinib can increase the risk of bleeding. It can reduce the number of platelets in your blood or affect how they work. Platelets are cells that help the blood to clot.

Tell your doctor, nurse or pharmacist 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.

Bruising on your arms is quite common with ibrutinib. But if you develop large bruises or unexplained bleeding during your treatment, contact the hospital straight away on the 24-hour number. This includes:

• nosebleeds
• bleeding gums
• heavy periods or unexpected vaginal bleeding
• blood in your urine (pee) or stools (poo)
• vomiting or coughing up blood
• 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.

You may need a drip to give you extra platelets. This is called a platelet transfusion. 

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

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 cause a condition called tumour lysis syndrome (TLS). When treatment makes large numbers of cancer cells die and break down quickly, they release lots of waste products into the blood. This can affect how well the kidneys work. It may also cause problems with the heart rhythm.

The risk of TLS is highest when you start taking venetoclax. You will have regular blood tests to check for TLS. Your cancer team will also give you advice about how much fluid to drink before and during your treatment. They will explain if you need:

• extra fluids through a drip
• medicines such as rasburicase through a drip, or allopurinol as tablets.

Contact the hospital straight away on the 24-hour number if you have symptoms that could be linked to TLS. This includes:

• feeling very hot (feverish) or having chills, and feeling sick
• pain in your joints or muscles
• feeling breathless or having an irregular heartbeat
• dark or cloudy urine
• feeling confused
• pain or swelling in your tummy
• fits or seizures.

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it ends. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired. 

If you feel sleepy, do not drive or use machinery.

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.

It is not common to feel sick with this treatment. But your doctor, nurse or pharmacist may prescribe you anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to. 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.

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:

• a sore mouth or throat affects how much you can drink or 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 during this 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 affect your skin. It may cause a rash, which might be itchy.

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

If your skin feels dry, try using soap-free cleansers and unperfumed moisturising cream every day.  

Rarely, this treatment can cause a serious skin reaction that needs to be treated immediately in hospital. 

Do not take any more of this treatment and contact the hospital straight away on the 24-hour number if you have any of these symptoms:

• a skin rash that is spreading
• blistering or peeling skin
• flu-like symptoms, such as a high temperature and joint pain
• sores on your lips or in your mouth.

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.

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 (palpitations)
• 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.

This treatment may contain lactose. If you have a lactose allergy or intolerance, ask your doctor, nurse or pharmacist for more information.

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.

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 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.