Mitotane

During a course of treatment, you usually see a:

• cancer doctor 
• chemotherapy nurse or a specialist nurse
• specialist pharmacist.

This is who we mean when we mention doctor, nurse or pharmacist in this information.

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.

Mitotane comes in tablets, so you can take it at home. Mitotane may be given on its own, or with other chemotherapy drugs. The nurse or pharmacist will give you the tablets to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for 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.

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.

Your doctor may reduce your dose or stop the treatment for a while if you have side effects.

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 1 to 2 times a week when you first start taking mitotane. When the doctors are happy with your dose, they will check your blood around once a month.

You usually take mitotane tablets 2 or 3 times a day. You should take the tablets at the same times every day. 

The tablets must be swallowed whole with a glass of water. They should not be chewed, broken, or crushed. 

Take the tablets during a meal that contains fats, such as milk, chocolate, oil or cheese. Fats help the body to absorb the drug.

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 chemotherapy drugs. If other people need to handle the tablets, they should wear disposable gloves.
• Keep them in the original package and at room temperature, away from moisture, heat and direct sunlight.
• Keep them safe, somewhere children cannot see or reach them.
• 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 taking 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 suddenly become unwell or have an accident, contact your doctor straight away. They may need to stop you taking 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.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is 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. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C 
• a temperature below 36°C
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, 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 your white blood cell count is low, your doctor may stop your treatment for a short time, until your cell count increases. Sometimes they will reduce the dose of your treatment.

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:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

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 feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

This treatment can reduce steroid levels. The side effects of this include:

• feeling very tired (fatigue)
• muscle weakness
• feeling confused
• feeling sick (nausea) or being sick (vomiting)
• pain in the tummy (abdomen) or diarrhoea. 

The steroid tablets prescribed by your doctor will reduce the risk of these effects. If you notice any of these symptoms, contact your doctor straight away.

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice. They may change your anti-sickness treatment. Let them know if you still feel sick.

This treatment can affect your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. You may also have stomach cramps. If you have a stoma, it may be more active than usual. 

If you are passing loose stools 3 or more times a day and this is not normal for you, contact the hospital as soon as possible on the 24-hour number. Follow the advice they give you about:

• taking anti-diarrhoea medicines 
• drinking enough fluids to keep you hydrated and to replace lost salts and minerals
• any changes to your diet that might help. 

They might also ask you for a specimen of your stool to check for infection.

You may get pain in your tummy (abdomen), or have indigestion. Your doctor can give you drugs to help improve these symptoms. Tell them if the pain gets worse or does not get better.

Sometimes, mitotane can cause cysts on the ovaries. If you have ovaries, tell the doctor or nurse if you notice pain further down in your pelvic area or unexpected vaginal bleeding.

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.

Mitotane can affect the nervous system. Symptoms of this can include:

• headache  
• 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, use tools or operate machinery, or drink alcohol if you notice any of these side effects.

This treatment can affect your skin. It may cause a rash, which may be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using soap-free cleansers and unperfumed moisturising cream every day. 

Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help. Changes to your skin usually improve when treatment ends.

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.

This treatment can raise the level of cholesterol. This is a fatty substance in the blood. You may have a blood test to check the level of cholesterol. Your doctor may refer you to a dietitian for advice on diet, or prescribe medicines to control your cholesterol levels.

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• throbbing pain or swelling in a leg or arm
• reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
• suddenly feeling breathless or coughing.

Always call 999 if you have:

• chest pain
• difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Drinking alcohol can make some symptoms worse. Your doctor, nurse or pharmacist can advise you about drinking alcohol while you are taking mitotane.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex during this treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.