Midostaurin (Rydapt)
Midostaurin is a type of targeted cancer drug. You pronounce it as my-doh-staw-rin.
It’s a treatment for acute myeloid leukaemia (AML).
You have midostaurin for AML if your cancer has a 
in the FLT3 . Your doctor will check for this mutation before you can start this drug.
You might have it on its own as . Or you might have midostaurin with the chemotherapy drugs daunorubicin and cytarabine.
This page is about midostaurin for maintenance treatment.
How does midostaurin work?
Midostaurin is a type of cancer growth blocker called a tyrosine kinase inhibitor (TKI).
Tyrosine kinase inhibitors block chemical messengers (enzymes) called tyrosine kinases. Tyrosine kinases help to send growth signals in cells, so blocking them stops the cell from growing and dividing.
How do you take midostaurin?
You take midostaurin as capsules.
When taking midostaurin capsules you swallow them whole with a full glass of water. You take the capsules with food. You should not open, crush or chew the capsules.
Whether you have a full or empty stomach can affect how much of a drug gets into your bloodstream.
You should take the right dose, not more or less.
Talk to your healthcare team before you stop taking or miss a dose of a cancer drug.
How often do you take midostaurin?
You take midostaurin as . Each cycle of treatment lasts 28 days (4 weeks). You have up to 12 cycles in total lasting up to 12 months.
You take midostaurin twice a day, morning and evening, 12 hours apart. You have it on every day of your cycle.
Tests
You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.
You also have heart tests such as an ECHO, ECG or both before treatment. You may continue to have heart tests during and after treatment with midostaurin.
What are the side effects of midostaurin?
Side effects can vary from person to person. They also depend on what other treatments you're having.
When to contact your team
Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:
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you have severe side effects
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your side effects aren’t getting any better
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your side effects are getting worse
Early treatment can help manage side effects better.
Contact your advice line immediately if you have signs of infection, including a temperature above 37.5C or below 36C.
We haven't listed all the side effects here. Remember it is very unlikely that you will have all of these side effects. But you might have some of them at the same time.
Common side effects
These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:
Increased risk of getting an infection
Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, headaches, feeling cold and shivery and generally unwell. You might have other symptoms depending on where the infection is.
Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection.
Feeling or being sick
Feeling or being sick is usually well controlled with anti sickness medicines. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also help.
It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treat it once it has started.
High blood sugar levels
High blood sugar levels can cause headaches, feeling thirsty and blurred vision. You have regular tests to check your blood sugar levels. You may need to check your levels more often if you are diabetic.
Changes to your heart's electrical activity
This is usually picked up on an electrocardiogram (ECG) test. Your body creates an electrical current to make the heart muscle beat. Midostaurin can cause changes to this process by increasing the time between the heart muscle squeezing (contracting) and relaxing. This is called QT prolongation.
In some people it can cause symptoms such as the heart beating fast, feeling lightheaded, fainting or having a blackout.
Tell your healthcare team straightaway if this happens.
Coping with side effects
We have more information about side effects and tips on how to cope with them.
What else do you need to know?
Other medicines, foods and drink
Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.
Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.
Pregnancy and contraception
This drug may harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you are having treatment with this drug and for at least 4 months afterwards.
Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you or your partner become pregnant while having treatment.
Women of childbearing age will have a pregnancy test within 7 days before starting treatment.
Loss of fertility
It is not known whether this treatment affects in people. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.
Breastfeeding
It is not known whether this drug comes through into the breast milk. Doctors usually advise that you don’t breastfeed for 4 months after your last treatment.
Other conditions
If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.
Immunisations
Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.
In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and one of the shingles vaccines called Zostavax.
You can have:
- other vaccines, but they might not give you as much protection as usual
- the flu vaccine (as an injection)
- the coronavirus (COVID-19) vaccine - talk to your doctor or pharmacist about the best time to have it in relation to your cancer treatment
Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your recovers from treatment.
Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.
If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. This is for 2 weeks following their vaccination.
Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.
More information about this treatment
For further information about this treatment and possible side effects go to the electronic Medicines Compendium (eMC) website. You can find the patient information leaflet on this website.
You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.
