Mitotane (Lysodren ®)
Mitotane is a chemotherapy drug used to treat a rare cancer of the adrenal glands called adrenal cortical carcinoma.
This information should ideally be read with our general information about chemotherapy and the type of cancer you have.
You usually have mitotane as an outpatient. During treatment, you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse. This is who we mean when we mention doctor or nurse in this information.
Taking your mitotane tablets
Mitotane is taken as tablets. The nurse or pharmacist gives you the chemotherapy tablets to take at home. Always take your tablets exactly as explained. This is important to make sure they work as well as possible for you.
Mitotane tablets are taken two or three times a day. Swallow the tablets whole with a glass of water during a meal that contains fats, such as milk or cheese. Fats help the body to absorb the drug.
You usually start taking a low dose of mitotane. The dose is then gradually increased. Your doctor will check the amount of mitotane in your bloodstream by taking regular blood tests. You will need to have your blood checked once or twice a week when you first start taking the tablets. Once the doctors are happy with your dose, your blood will be checked about once a month.
You will be given steroid tablets to take while you are having mitotane. This is because mitotane can reduce the production of steroids in the body. Steroids are natural hormones produced by the adrenal glands. Not producing enough steroids can affect the body’s defence system (immune system). Your body’s ability to respond quickly to stress (such as shock, severe injury or infection) may be reduced. Your doctor will monitor this closely. If you experience an injury, infection or other stressful situation, your treatment may need to be stopped until you recover.
Your pharmacist will give you a card to carry at all times to let people know you're taking mitotane. In case you suddenly become unwell or have an accident, the card will tell the doctor that you are taking mitotane and steroids. Your pharmacist may suggest that you wear a medical alert bracelet stating that you are taking mitotane.
If you forget to take a dose of mitotane, do not double the dose next time. Take your normal dose at the next planned time and let your pharmacist, nurse or doctor know.
Possible side effects of mitotane
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We explain the most common side effects of mitotane here. But we don’t include all the rare ones that are unlikely to affect you.
You may get some of the side effects we mention, but you are very unlikely to get all of them. If you are having other chemotherapy drugs as well as mitotane, you may have some side effects that we don’t list here. Always tell your doctor or nurse about the side effects you have.
Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained. This means they will be more likely to work better for you. Your nurse will give you advice about managing your side effects. After your treatment is over, the side effects will start to improve.
Serious and life-threatening side effects
Sometimes cancer drugs can result in very serious side effects. Rarely, these may be life-threatening. Your cancer doctor and nurse can explain the risk of these side effects to you.
Contact the hospital
Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.
More information about mitotane
We’re not able to list every side effect for this treatment here, particularly the rarer ones. For more detailed information you can visit the electronic Medicines Compendium (eMC).
Risk of infection
Mitotane can reduce the number of white blood cells in your blood. This will make you more likely to get an infection. When the number of white blood cells is low it’s called neutropenia.
Contact the hospital straight away on the number you’ve been given if:
your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team
you suddenly feel unwell, even with a normal temperature
you have symptoms of an infection – this can include feeling shaky, a sore throat, a cough or needing to pass urine a lot.
Bruising and bleeding
Mitotane can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. If you have any bruising or bleeding you can’t explain, tell your doctor. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin.
Anaemia (low number of red blood cells)
Mitotane 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. If you feel like this, tell your doctor or nurse. If you are very anaemic, you may need a drip to give you extra red blood cells (blood transfusion).
Reduced steroid levels
This can cause side effects such as feeling extremely tired (fatigue), muscle weakness, dizziness, fainting and vomiting. The steroid tablets prescribed by your doctor will reduce the risk of these effects. If you're feeling unwell with any of these symptoms, contact your doctor immediately.
Your doctor can prescribe effective anti-sickness drugs to prevent or reduce sickness or vomiting. Take the drugs exactly as your nurse or pharmacist explains. It is easier to prevent sickness than to treat it after it has started.
If the sickness is not controlled, tell your doctor. They can prescribe other anti-sickness drugs that may work better for you.
Loss of appetite
You may lose your appetite during your treatment. Try to eat small meals regularly. Don’t worry if you don’t eat much for a day or two. If your appetite doesn’t improve after a few days, let your nurse or dietitian know. They can give you advice on getting more calories and protein in your diet. They may give you food supplements or meal replacement drinks to try. Your doctor can prescribe some of these. You can also buy them from chemists.
Mitotane can cause diarrhoea. This can usually be easily controlled with medicine. Tell your doctor if it is severe or continues. If you have diarrhoea, it’s important to drink plenty of fluids to stop you becoming too dry (dehydrated).
Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth and/or dentures in the morning, at night and after meals. Use a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It is important to follow any advice you are given. You should also drink plenty of fluids.
If you have any problems with your mouth, tell your nurse or doctor. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.
Effects on the nervous system
Mitotane can affect the nervous system. You may feel anxious or restless, have problems sleeping or experience mood changes. You may feel drowsy or confused. Or you may feel dizzy or unsteady (vertigo). You may have pins and needles or feel tingling in your arms and legs. If you notice any of these symptoms, tell your doctor or nurse straight away. They may make some changes to your treatment if they become a problem for you.
It’s important not to drive or operate machinery if you notice these effects.
Feeling very tired is a common side effect of mitotane, especially towards the end of treatment and for some weeks after it’s over. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery.
Mitotane can cause a rash, which may be itchy. Your doctor can prescribe medicine to help with this. 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 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're very unlikely to notice any problems, but your doctor or nurse will take regular blood samples to check your liver is working properly.
Less common side effects of mitotane
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These side effects affect fewer than 1 in 10 people (under 10%).
Mitotane may affect your eyesight. However, this is very rare. If you notice any blurred vision or clouding, let your doctor know.
It is important to tell your doctor or nurse straight away if you feel ill or have severe side effects. This includes any we don’t mention here.
Other information about mitotane
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Blood clot risk
Cancer increases the chances of a blood clot (thrombosis) and chemotherapy can add to this. A clot can cause symptoms such as pain, redness and swelling in a leg, breathlessness and chest pain. If you have any of these symptoms, contact your doctor straight away. A blood clot is serious but your doctor can treat it with drugs that thin the blood. Your doctor or nurse can give you more information.
Some medicines, including those that you can buy in a shop or chemist, can be harmful to take when you are having mitotane.
You should not take the herbal drug St John’s Wort or the water tablet (diuretic) spironolactone (known as Aldactone and Aldactide ®) when you're taking mitotane. If you're taking blood-thinning drugs (anticoagulants), such as warfarin, your dose may need to be monitored more closely.
Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.
Drinking alcohol can make some symptoms worse. You should avoid drinking alcohol while you are taking mitotane.
Mitotane can affect your fertility (being able to get pregnant or father a child). If you are worried about this, talk to your doctor before treatment starts.
Your doctor will advise you not to become pregnant or father a child while you are taking mitotane. This is because the drugs may harm a developing baby. It is important to use contraception during, and for a few months after, chemotherapy. You can discuss this with your doctor or specialist nurse.
If you have sex within the first couple of days of having chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluid.
Changes to your periods
Chemotherapy can sometimes stop the ovaries working. You may not get a period every month and they may eventually stop. In some women this is temporary but for others it is permanent and they start the menopause.
Women should not breastfeed during treatment and for a few months after treatment ends. This is in case there is chemotherapy in their breast milk.
Medical and dental treatment
If you need to go into hospital for any reason other than cancer, always tell the doctors and nurses that you are taking mitotane. Tell them the name of your cancer doctor so they can ask for advice.
Always tell your dentist you are taking mitotane.
This page has been compiled using information from a number of reliable sources, including the electronic Medicines Compendium (eMC; medicines.org.uk). If you’d like further information on the sources we use, please feel free to contact us.
This information was reviewed by a medical professional.
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