Mitotane is also called Lysodren®. It is used to treat a rare cancer of the adrenal glands called adrenal cortical carcinoma.
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. 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.
You take mitotane as tablets. Sometimes you have it in combination with other cancer treatments.
The nurse or pharmacist will give you the mitotane tablets to take at home. Always take your tablets exactly as the nurse or pharmacist explains. This is important to make sure they work as well as possible for you. The nurse or pharmacist may give you a copy of the treatment plan to take home with you.
Your nurse or pharmacist may also give you anti-sickness drugs and other medicines to take home. Take all your tablets exactly as they have been explained to you.
During treatment, a nurse or person trained to take blood (phlebotomist) will take regular blood samples from you. This is to check your general health, such as how well your liver and kidneys are working. Blood tests will also tell the doctor or nurse whether your blood cells are at a safe level for you to continue treatment. Your levels of certain hormones may be checked. Sometimes, your doctor or nurse might ask you to collect your urine (pee) for 24 hours to measure a hormone called cortisol.
During treatment, you will have appointments with the doctor or nurse. They will talk to you about your blood results and ask you how you have been feeling. They may check your weight and your blood pressure.
Your doctor may reduce your dose or stop the treatment for a while if you have side effects.
If the side effects can be managed, you will usually carry on taking mitotane for as long as it is working for you. Do not stop taking mitotane without talking to your doctor first.
Taking mitotane tablets
You usually take mitotane tablets 2 or 3 times a day. But always take your tablets as the nurse or pharmacist explains. Swallow the tablets whole with a glass of water. Take them during a meal that contains fats, such as milk, chocolate, 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.
Other things to remember about your tablets:
- Do not take any tablets that look broken or damaged.
- Wash your hands after taking your tablets.
- Other people should avoid direct contact with the tablets, especially if they are pregnant. If other people need to handle the tablets, they should wear disposable gloves.
- Keep your tablets 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.
If you become unwell or have an accident
Steroids help the body to respond quickly to stress, such as shock, severe injury or infection. If you suddenly become unwell or have an accident, contact your doctor straight away. They may need to stop your mitotane 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. It is important that you take steroids exactly as your doctor explains.
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 sometimes called neutropenia.
An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. Contact the hospital straight away on the 24-hour contact number you have been given 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
- your temperature goes below 36°C (96.8°F).
Symptoms of an infection include:
- feeling shivery and shaking
- a sore throat
- a cough
- needing to pass urine (pee) a lot, or discomfort when you pass urine.
It is important to follow any specific advice your cancer treatment team gives you.
You will have regular blood tests during treatment. If needed, your doctor may reduce or delay your treatment for a short time, until your cell count increases.
Bruising and bleeding
This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.
If the number of platelets is low, you may bruise or bleed easily. You may have:
- bleeding gums
- heavy periods
- blood in your urine (pee) or stools (poo)
- tiny red or purple spots on the skin that may look like a rash.
Tell your doctor if you have any unexplained bruising or bleeding. You may need a drip to give you 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. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may have symptoms such as:
- pale skin
- lack of energy
- feeling breathless
- feeling dizzy and light-headed.
Tell your doctor or nurse if you have these symptoms.
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.
Your doctor will give you anti-sickness drugs to help prevent or control sickness during your treatment. 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 often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit) more than once in 24 hours, contact the hospital as soon as possible. They will give you advice. Your doctor or nurse 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.
This treatment may cause diarrhoea. Diarrhoea means passing more stools than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.
- try to drink at least 2 litres (31/2 pints) of fluids each day
- avoid alcohol, caffeine and high-fibre foods
- contact the hospital for advice.
This treatment can cause abdominal (tummy) pain. Tell your doctor or nurse so they can give you advice. They may give your treatments to help.
Sometimes, mitotane can cause cysts on the ovaries. Tell the doctor or nurse if you have ovaries and notice pain further down in your pelvic area.
Sore mouth and throat
This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.
If your mouth or throat 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 and throat.
Sucking ice chips may sometimes help relieve mouth or throat pain.
Effects on the nervous system
Mitotane can affect the nervous system. Symptoms of this can include:
- changes in your mood or sleep
- memory loss, confusion or problems with concentration
- feeling drowsy or weak
- feeling dizzy or unsteady (vertigo)
- problems with moving, walking or speaking
- 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.
Mitotane can cause a rash, which may be itchy. Your doctor can prescribe medicine to help. Any changes to your skin usually improve after treatment finishes.
Breast swelling or tenderness
Changes in the way your liver works
Mitotane may affect how your liver works. This is usually mild and goes back to normal after treatment. Your doctor or nurse will take regular blood samples to check your liver is working properly.
Tell your doctor if you or anyone else notices:
- your skin or eyes look yellow
- your urine is dark.
Raised cholesterol levels
Mitotane may increase the cholesterol levels in your blood. Your doctor will monitor your cholesterol levels with blood tests. If your cholesterol is high, you may have medicine to treat it.
Blood clot risk
Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:
- throbbing pain, redness or swelling in a leg or arm
- suddenly feeling breathless or coughing
- sharp chest pain, which may be worse when you cough or take a deep breath.
If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.
A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.
You can help reduce the risk of developing a blood clot by:
- staying active during treatment
- drinking plenty of fluids, especially water.
You may be given anticoagulants to help prevent a clot.
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.
Driving and using machines
Drinking alcohol can make some symptoms worse. You should avoid drinking alcohol while you are taking mitotane.
Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.
Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.
If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines, such as shingles, contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.
Your doctor will advise you not to get 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 while after treatment finishes. Your doctor, nurse or pharmacist can tell you more about this.
You are advised not to breastfeed while having this treatment, or for some time after treatment finishes. This is because the drugs could be passed to the baby through breast milk.
Your doctor or nurse can give you more information.
Changes to periods
If you have a period, these may become irregular or stop while you are having this treatment. This may be temporary, but it can sometimes be permanent. Your menopause may start sooner than it would have done. Your doctor or nurse can give you more information.
If you have sex during a course of this treatment, you should use barrier protection such as a condom or dental dam. This will protect your partner if any of the drug is in your semen or vaginal fluid.
Medical and dental treatment
If you need medical treatment for any reason other than cancer, always tell the doctors and nurses 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.
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.