Midostaurin

You may have midostaurin capsules as part of your first treatment for AML. You take it for 14 days between cycles of chemotherapy. Midostaurin can also be given after this on its own for up to a year.

During treatment you will see a leukaemia doctor (a 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.

Your doctor, nurse or pharmacist will discuss your treatment plan with you. They will explain when you should take midostaurin, and how long you should take it for. They may give you a copy of your treatment plan to keep. 

If you are having treatment as an outpatient, they will give you the capsules to take home. Always take the capsules exactly as explained. This is important to make sure they work as well as possible for you.

Always take the capsules exactly as explained. This is important to make sure they work as well as possible for you.

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

You should take midostaurin capsules with food. Swallow them whole with a glass of water. Do not chew, open or crush them. Take them at the same times every day.

If you forget to take the capsules, take the next dose at the usual time. Do not take a double dose.

Other things to remember about your capsules:

• Keep them in the original package.
• Keep them safe and out of sight and reach of children.
• If you are sick just after taking the capsules, contact the hospital. Do not take another dose.
• If your treatment is stopped, return any unused capsules to the pharmacist.

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.

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.

Midostaurin may increase your risk of bruising and bleeding. If you are also having chemotherapy this may reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. If you have any bruising or bleeding that you cannot explain, tell your doctor. This includes:

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

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

This treatment might increase certain risk factors for heart problems. Tell your doctor if you have:

• had any problems with your heart
• high blood pressure
• high levels of cholesterol – a fatty substance in your blood. 

They can monitor or treat these if needed. Talk to your doctor if you are worried about this. 

Things you can do to take care of your heart include:

• not smoking
• maintaining a healthy weight 
• being physically active.

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.

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

If your mouth or throat is sore:

• tell your nurse or doctor – they can give you a mouthwash or medicines to help
• try to drink plenty of fluids
• avoid alcohol, tobacco and foods that irritate your mouth and throat.

You may get pain in your muscles or joints during this treatment. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better. Having warm baths and taking regular rests may help. 

This treatment may raise your blood sugar levels and increase the risk of diabetes. 

You will have regular blood tests to check this. 

Signs of raised blood sugar include:

• feeling thirsty
• needing to pass urine (pee) more often than usual
• feeling more tired than usual.

Contact the hospital on the 24-hour number if you have these symptoms during treatment or after it ends.

If you already have diabetes, your blood sugar levels may be higher than usual. You may need advice and support from your GP or diabetes team about managing this.

This treatment may affect how your liver works. This is usually mild. You will have blood tests to check how well your liver is working.

This treatment may affect your skin. Your doctor or nurse can tell you what to expect. If you have this treatment with chemotherapy, skin reactions can sometimes be serious.

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

This treatment can cause changes to the lungs. Tell your doctor, nurse or pharmacist if you develop: 

• a cough that does not go away
• wheezing
• breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

This treatment can cause low blood pressure and dizziness. Your doctor or nurse will check your blood pressure during your treatment. If you feel dizzy or faint, tell your doctor or nurse.

This treatment can cause indigestion or pain in the upper tummy area (upper abdomen). If you have this side effect, tell your doctor or nurse. They can give you advice about treatments that may help.  

We want everyone affected by cancer to feel our information is written for them.

We want our information to be as clear as possible. To do this, we try to:

• use plain English
• explain medical words
• use short sentences
• use illustrations to explain text
• structure the information clearly
• make sure important points are clear.

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