Gilteritinib (Xospata®)

Gilteritinib comes as tablets, so you can take it at home.

During treatment, you usually see a:

• leukaemia doctor (a haematologist)
• cancer nurse or specialist nurse
• specialist pharmacist. 

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

Your doctor, nurse or pharmacist will discuss your treatment plan with you. They will explain how to take gilteritinib. They will give you the tablets to take home with you. Take them exactly as has been explained to you. This is important to make sure they work as well as possible for you.

Try to take your gilteritinib tablets at the same time every day. Swallow the tablets whole with water. Do not chew, break or crush them. You can take them with or without food.

If you forget to take the tablets, take the missed dose as soon as possible on the same day. Do not take a double dose.

If you are sick after taking the tablets, do not take another dose. Take your next dose at the usual time. 

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, somewhere children cannot see or reach them.
• If your treatment is stopped, return any unused tablets to the pharmacist.

Gilteritinib can affect your blood cells and cause symptoms called differentiation syndrome. This is more likely to happen in the first 3 months of treatment. It is important to contact the hospital straight away on the 24-hour contact number if you have any of these symptoms:

• high temperature
• cough
• feeling dizzy
• putting on weight very quickly
• problems breathing
• swelling of legs or arms
• rash
• peeing less than usual.

If your symptoms are caused by differentiation syndrome, you may need treatment with steroids until they improve.

This treatment may cause severe diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. If you have a stoma, it will be more active than usual. 

Your doctor, nurse or pharmacist may give you anti-diarrhoea drugs to take at home. 

If you have diarrhoea or a mild increase in stoma activity, follow their advice about: 

• taking anti-diarrhoea drugs 
• how much and what type of fluids to drink 
• any changes to your diet that might help. 

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

• you have diarrhoea at night 
• you have uncomfortable stomach cramps
• you have diarrhoea 4 or more times in a day 
• you have a moderate increase in stoma activity 
• the anti-diarrhoea drugs do not work within 24 hours.

You may need to give a stool sample, or go to hospital to have fluids through a drip or antibiotics.

Sometimes this treatment can affect how your pancreas works. 

Contact the hospital straight away if you have the following symptoms:

• pain in your tummy (abdomen)
• feeling or being sick
• high temperature.

You may feel sick during this treatment. Your doctor can give you anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluids and eat small amounts often. If you continue to feel sick, or if you vomit more than once in 24 hours, contact the hospital as soon as possible. They will give you advice and may change the anti-sickness drug to one that works better for you.

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. 

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. 

Feeling tired is a common side effect. Try to pace yourself and plan your day so you have time to rest between activities.

Being physically active can help to manage tiredness and give you more energy. It also:

• helps you sleep better
• reduces stress
• improves your bone health.

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

This treatment can affect the way your heart works. Your doctor may do tests to see how well your heart is working. You may have these tests 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.

Other conditions can cause these symptoms. But it is important to get them checked by a doctor. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

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.

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.

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.

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.