Mitotane (Lysodren®) is used to treat a rare cancer of the adrenal glands called adrenal cortical carcinoma. It is best to read this information with our general information about chemotherapy and the type of cancer you have.
Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.
During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.
Mitotane is taken as tablets. The nurse or pharmacist gives you the chemotherapy tablets to take at home. Always take your tablets exactly as they have explained. This is important to make sure they work as well as possible for you.
Taking mitotane tablets
Mitotane tablets are taken two or three times a day. Swallow the tablets whole with a glass of water. Take them during a meal that contains fats, such as milk, oil or cheese. Fats help the body to absorb the drug.
You usually start by taking a low dose of mitotane. Your doctor will gradually increase the dose. They will check the amount of mitotane in your blood by taking regular blood tests. You will need to have your blood checked once or twice a week when you first start taking mitotane. Once the doctors are happy with your dose, they will check your blood around once a month.
If you forget to take a dose of mitotane, do not take a double dose. Take your next dose as normal and let your pharmacist, nurse or doctor know. Do not take a double dose unless your doctor tells you to.
Other things to remember about your tablets:
- Wash your hands after taking your tablets.
- Other people should avoid direct contact with the chemotherapy drugs.
- Keep them in the original package and at room temperature, away from heat and direct sunlight.
- Keep them safe and out of sight and reach of children.
- If you are sick just after taking the tablets, contact the hospital. Do not take another dose.
- If your treatment is stopped, return any unused tablets to the pharmacist.
Your doctor may give you steroid tablets to take while you are having mitotane. This is because mitotane can reduce the amount of steroids your body normally makes. Steroids are natural hormones produced by the adrenal glands.
Steroids help the body to respond quickly to stress, such as shock, severe injury or infection. If you have an injury, infection or other stressful situation, your doctor may need to stop your treatment until you recover.
Your pharmacist will give you a card to carry at all times. If you suddenly become unwell or have an accident, the card will tell the doctor that you are taking mitotane and may be taking steroids. Your pharmacist may suggest that you wear a medical alert bracelet that shows you are taking mitotane.
We explain the most common side effects of this treatment here. We also include some less common side effects. You may get some of the side effects we mention, but you are unlikely to get all of them.
If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.
Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.
Serious and life-threatening side effects
Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.
We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.
Risk of infection
This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is called neutropenia.
If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have if:
- your temperature goes over 37.5°C (99.5°F)
- you suddenly feel unwell, even with a normal temperature
- you have symptoms of an infection.
Symptoms of an infection include:
- feeling shivery
- a sore throat
- a cough
- needing to pass urine often.
It is important to follow any specific advice your cancer treatment team gives you.
You will have regular blood tests during treatment. If your white blood cell count is low, your doctor may reduce or delay your treatment for a short time.
Bruising and bleeding
This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.
Tell your doctor if you have any bruising or bleeding that you cannot explain. This includes:
- bleeding gums
- tiny red or purple spots on the skin that may look like a rash.
Some people may need a drip to give them extra platelets. This is called a platelet transfusion.
Anaemia (low number of red blood cells)
This treatment can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.
Reduced steroid levels
This treatment can cause reduced steroid levels. The side effects of this include:
- feeling very tired (fatigue)
- muscle weakness
- dizziness and fainting
The steroid tablets prescribed by your doctor will reduce the risk of these effects. If you notice any of these symptoms, contact your doctor immediately.
You may feel sick in the first few days after this treatment. Your doctor will 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.
Loss of appetite
This treatment can affect your appetite. Do not worry if you do not eat much for a day or two. But if your appetite does not come back after a few days, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.
You may get a sore mouth or mouth ulcers. This can make you more likely to get a mouth infection.
Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.
If your mouth 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.
Effects on the nervous system
Mitotane can affect the nervous system. Symptoms of this can include:
- feeling anxious or restless
- have problems sleeping or mood changes
- feeling drowsy or confused
- feeling dizzy or unsteady (vertigo)
- tingling in your arms and legs (pins and needles).
If you notice any of these symptoms, tell your doctor or nurse straight away. They may make some changes to your treatment if the symptoms become a problem for you.
It is important not to drive or operate machinery if you notice any of these side effects.
Feeling tired is a common side effect. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy. If you feel sleepy, do not drive or operate machinery.
Mitotane can cause a rash, which may be itchy. Your doctor can prescribe medicine to help. Any changes to your skin are usually temporary and improve when treatment finishes.
Some men may develop breast swelling and tenderness. Your doctor can prescribe medicines to help reduce any discomfort.
Changes in the way your liver works
Mitotane may affect the way your liver works. This is usually mild and goes back to normal after treatment. You are very unlikely to notice any problems, but your doctor or nurse will take regular blood samples to check your liver is working properly.
Raised cholesterol levels
Mitotane can increase the cholesterol levels in your blood. Your doctor will monitor your cholesterol levels with blood tests.
Blood clot risk
Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:
- pain, redness or swelling in a leg or arm
- chest pain.
If you have any of these symptoms, contact a doctor straight away.
A blood clot is serious, but can be treated with drugs that thin the blood. Your doctor or nurse can give you more information.
Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:
- medicines you have been prescribed
- medicines you buy in a shop or chemist
- vitamins, herbal drugs and complementary therapies.
Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.
You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.
Drinking alcohol can make some symptoms worse. You should avoid drinking alcohol while you are taking mitotane.
Some cancer drugs can affect whether you can get pregnant or make someone pregnant.
If you are a woman, your periods may become irregular or stop. This may be temporary, but for some women it is permanent. Your menopause may start sooner than it would have done.
Your doctor will advise you not to become pregnant or make someone pregnant while having this treatment. The drugs may harm a developing baby. It is important to use contraception during your treatment and for a few months after treatment finishes. Your doctor, nurse or pharmacist can tell you more about this.
If you have sex during this course of chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.
Women are advised not to breastfeed while having this treatment. This is because the drugs could be passed to the baby through breast milk.
Medical and dental treatment
If you need medical treatment for any reason other than cancer, always tell the doctors and nurses that you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.
If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.