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Mitotane

Mitotane pronounced my-toe-tain is a chemotherapy drug. It is also called Lysodren. It is used to treat a rare type of adrenal gland cancer (adrenal cortical cancer) that has spread or come back. 

How it works

Researchers are still looking into how mitotane works. We know that it reduces the amount of hormones produced by the adrenal gland. This can control or shrink the cancer for some time. 

How you have mitotane

Mitotane are tablets you take 2 or 3 times a day. You take them with a glass of water during, or straight after, a meal. It is best to take them with foods that contain fats such as milk, chocolate or vegetable oils. This will affect how much drug gets into your bloodstream.

Don't take a double dose of the mitotane if you forget to take it. Just continue with your usual dose. 

You must take tablets and capsules according to the instructions your doctor or pharmacist gives you.

You should take the right dose, not more or less.

Never stop taking a cancer drug without talking to your specialist first. 

Steroids and mitotane

You may need to take a steroid when you are taking mitotane. This is because mitotane lowers the amount of natural steroids produced by the adrenal glands. These steroids help the body to react quickly in stressful situations such as a shock, injury or infection. 

If you have a severe injury or become very unwell you may need to stop taking mitotane. You have a card to carry saying you are taking mitotane. In the case of an accident or sudden illness the card tells the doctor you are taking mitotane and may also be taking steroids. 

When you have it

You start on a low dose of mitotane. Your doctor gradually increases the dose until you have the correct amount in your bloodstream. You might take a lot of tablets each day for the correct dose. 

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 have regular blood tests to check the level of mitotane in your blood. At first you have these at least once a week. Once the level is stable you may be able to have the tests once a month. 

Side effects

We haven't listed all the side effects. It's very unlikely that you will have all of these side effects, but you might have some of them at the same time.

How often and how severe the side effects are can vary from person to person. They also depend on what other treatments you're having. For example, your side effects could be worse if you're also having other drugs or radiotherapy.

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you closely during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

  • you have severe side effects 
  • your side effects aren’t getting any better
  • your side effects are getting worse

Early treatment can help manage side effects better. 

Contact your doctor or nurse immediately if you have signs of infection, including a temperature above 37.5C or below 36C.

Common side effects

Each of these effects happens in more than 1 in 10 people (10%). You might have one or more of them. They include:

Loss of appetite

You might lose your appetite for various reasons when you are having cancer treatment. Sickness, taste changes or tiredness can put you off food and drinks.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. Avoiding fatty or fried foods, eating small meals and snacks, drinking plenty of water, and relaxation techniques, can all 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 treating it once it has started.

Diarrhoea

Contact your advice line if you have diarrhoea, such as if you've had 4 or more loose watery poos (stools) in 24 hours. Or if you can't drink to replace the lost fluid. Or if it carries on for more than 3 days.

Your doctor may give you anti diarrhoea medicine to take home with you after treatment. Eat less fibre, avoid raw fruits, fruit juice, cereals and vegetables, and drink plenty to replace the fluid lost.

Tiredness and weakness (fatigue)

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

Drowsiness

This drug may make you feel drowsy or dizzy. Don’t drive or operate machinery if you have this.

Tummy (abdominal) pain

Tell your treatment team if you have this. They can check the cause and give you medicine to help. 

Tingling in the fingers or toes

Numbness or tingling in fingers or toes is often temporary and can improve after you finish treatment. Talk to the team looking after you when you first notice this. 

Muscle weakness

You might have muscle pain during treatment. Let your treatment team know so they can advise you on how to reduce it.

Skin rash

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes. Your nurse will tell you what products you can use on your skin to help.

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. 

Breast swelling in men (gynaecomastia)

Talk to your doctor or nurse about this.

Confusion

You or the people around you may notice that you feel confused. Tell your doctor or nurse if this happens.

Liver changes

You might have liver changes that are usually mild and unlikely to cause symptoms. They usually go back to normal when treatment finishes. You have regular blood tests to check for any changes in the way your liver is working.

High fat levels in the blood

You will have regular blood tests to monitor this. 

Occasional side effects

Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them. They include:

  • headaches
  • muscle wasting
  • hot flushes
  • difficulty sleeping (insomnia)
  • memory problems
  • breathlessness and looking pale
  • yellowing of the skin or whites of the eyes (jaundice)
  • bruising, bleeding gums or nosebleeds

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do I need to know?

Other medicines, foods and drink

Cancer drugs can interact with some other medicines and herbal products. Tell your doctor or pharmacist about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies.

Pregnancy and contraception

You may not be able to become pregnant or father a child after treatment with this drug. Talk to your doctor before starting treatment if you think you may want to have a baby in the future. Men may be able to store sperm before starting treatment. Women may be able to store eggs or ovarian tissue but this is rare.

Fertility

This treatment might harm a baby developing in the womb. It is important not to become pregnant or father a child while you're having treatment and for a few months afterwards. Talk to your doctor or nurse about effective contraception before starting treatment.

Breastfeeding

Don’t breastfeed during this treatment because the drug may come through into your breast milk.

Treatment for other conditions 

Always tell other doctors, nurses, pharmacists or dentists that you’re having this treatment if you need treatment for anything else, including teeth problems.

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 the shingles vaccine (Zostavax).

You can:

  • have other vaccines, but they might not give you as much protection as usual
  • have the flu vaccine (as an injection)
  • 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 oral polio or the typhoid vaccine.

This also includes the rotavirus vaccine given to babies. The virus is in the baby’s poo for up to 2 weeks and could make you ill. So avoid changing their nappies for 2 weeks after their vaccination if possible. Or wear disposable gloves and wash your hands well afterwards.

You should also avoid close contact with children who have had the flu vaccine nasal spray. You should do so for 2 weeks following their vaccination if you have a severely weakened immune system.

More information about this treatment

For further information about this treatment go to the electronic Medicines Compendium (eMC) website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.

Information and help