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 your type of cancer.
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 chemotherapy 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, or at the end of a fat-rich meal.
You usually start taking a low dose of mitotane. The dose is then gradually increased. Your doctor will monitor the amount of drug in your bloodstream by taking blood tests at regular intervals. You will need to have your bloods 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 every month.
You’ll be given steroid tablets to take while you're 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 situations, your treatment may need to be stopped.
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. They may suggest that you wear a medical alert bracelet stating that you are taking mitotane.
If you forget to take a dose, do not take double the dose next time. Take your normal dose 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, 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.
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
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 contact 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. Tell your doctor if you have any bruising or bleeding you can’t explain. 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. 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 (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 will prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist explains to you. It’s easier to prevent sickness than to treat it after it has started.
If you still feel sick or are vomiting, contact the hospital as soon as possible. They can give you advice and change the anti-sickness drug to one that works better for you.
Some anti-sickness drugs can make you constipated. Tell your doctor or nurse if this is a problem.
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 and you can buy them from chemists.
Your doctor can prescribe drugs to control diarrhoea. Let them know if it is severe or if it doesn’t get better. Make sure you drink at least two litres (three and a half pints) of fluids every day if you have diarrhoea.
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 morning and 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’s important to follow any advice you are given and to drink plenty of fluids.
Tell your nurse or doctor if you have any problems with your mouth. 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. You may have pins and needles or feel tingling in your arms and legs. Tell your doctor or nurse straight away if you notice any of these symptoms. 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. It’s often worse towards the end of treatment and for some weeks after it’s finished. 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. Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines 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 reduce any discomfort.
Mitotane may affect how your liver works. This is usually mild and goes back to normal after treatment. You will have blood tests to check how well your liver is working.
Less common side effects of mitotane
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Mitotane may affect your eyesight, however this is very rare. Let your doctor know if you notice any blurred vision or clouding.
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. Contact your doctor straight away if you have any of these symptoms. 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 can interact with chemotherapy or be harmful when you are having chemotherapy. This includes medicines you can buy in a shop or chemist. 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.
Mitotane can affect your fertility (being able to get pregnant or father a child). If you are worried about this, you can talk to your doctor before treatment starts.
Your doctor will advise you not to become pregnant or father a child during treatment. This is because the drugs may harm a developing baby. It’s important to use contraception during and for a few months after chemotherapy. You can talk to your doctor or nurse about this.
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 are advised not to breastfeed during treatment and for a few months after. 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 having chemotherapy. Explain you are taking chemotherapy tablets that no one should stop or restart without advice from your cancer doctor. Give them contact details for your cancer doctor.
Talk to your cancer doctor or nurse if you think you need dental treatment. Always tell your dentist you are having chemotherapy.
This section has been compiled using a number of reliable sources, including:
electronic Medicines Compendium (eMC) (accessed August 2013).
British National Formulary. 65th edition. 2013. British Medical Association and Royal Pharmaceutical Society of Great Britain.
Micromedex® 2.0, 2013, Truven Health Analytics Inc. Available at: micromedexsolutions.com (accessed August 2013).
With thanks to: Christine Clarke, Lead Pharmacist Oncology & Haematology, who reviewed this edition.
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