Ivosidenib

You will have ivosidenib as tablets that you take 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.

You will also have a test of your heart called an ECG (electrocardiogram). This checks the electrical activity of your heart. It can show any changes to how your heart is working. You have an ECG before you start taking ivosidenib and then once a week for the first 3 weeks of treatment. After this, some people have an ECG every month during their treatment. Your cancer doctor, nurse or pharmacist will explain how often you will have ECGs.

You usually take ivosidenib for as long as it is working well for you and the side effects are manageable. Your cancer team will discuss your treatment plan with you.

Your doctor, nurse of pharmacist will give you the tablets to take home. Always take them exactly as they 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.

You take ivosidenib once a day. Your doctor, nurse or pharmacist will tell you how many tablets to take.

Make sure you:

• take them on an empty stomach – do not eat anything for 2 hours before taking the tablets and for 1 hour after
• swallow them whole with a glass of water
• do not chew, break or crush them
• take them at the same time every day
• avoid grapefruit and grapefruit juice.

If you forget to take the tablets, take the missed dose as soon as possible if it is within 12 hours of the missed dose. If more than 12 hours have passed, do not take this dose. Take your next dose at your usual time.

Do not take a double dose. Tell your doctor, nurse or pharmacist at your next appointment that you missed a tablet.

If you are sick (vomit) just after taking ivosidenib, do not take an extra dose. Take your next dose at the usual time. Do not take a double dose.

Other things to remember about your tablets:

• 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.
• Do not throw away unused tablets. Return them to your cancer team at the hospital.
• Do not eat the sachet found in the bottle.

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.

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 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.

You may get pain in your tummy (abdomen), or have indigestion. Your doctor, nurse or pharmacist can give you advice or treatment to help. Contact the hospital straight away on the 24-hour number if your symptoms do not go away, or get worse.

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.

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 your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

You may have a build-up of fluid in the tummy (abdomen) lining. This is called ascites. It can make the tummy area look swollen. The doctor can put a drain in to remove the fluid. Contact the hospital straight away on the 24-hr number if you notice any swelling. 

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 can affect your skin. It may cause a rash, which may be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using soap-free cleansers and 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. Changes to your skin usually improve when treatment ends.

This treatment can affect how the heart works. You will have tests to check how well your heart is working. Before you start treatment, you will have an ECG of your heart. You continue having these once a week for the first 3 weeks of treatment. After this you may have them once a month.

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.

This treatment can affect how the liver works. You will have regular blood tests to check this. Sometimes liver changes can be serious. Contact the hospital straight away on the 24-hour number if you have any of these symptoms:

• yellow skin or eyes
• feeling very sleepy
• dark urine (pee)
• unexplained bleeding or bruising
• pain in the right side of your tummy (abdomen).

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

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. You may be asked to take a pregnancy test before starting ivosidenib.

It is important to use effective contraception to prevent pregnancy. Follow the advice of your healthcare team about what types of contraception to use. Ivosidenib can affect how well hormonal contraception works so you will need to use a barrier method. Your healthcare team will tell you how long after treatment you should continue to use contraception.

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.

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.

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.