Mitotane (Lysodren)

Mitotane is pronounced my-toe-tain. It is a chemotherapy drug used to treat a rare type of cancer of the adrenal glands called adrenal cortical cancer. It is also called Lysodren.

Researchers are still looking into how mitotane works. We know that it reduces the amount of hormones produced by the adrenal gland. It is thought that this has some effect on the cancer.

You take mitotane as tablets 2 or 3 times a day. You should take them with a glass of water during, or straight after, a meal.

You start on a low dose and your doctor gradually increases the dose until you have the correct amount of mitotane in your bloodstream. You may have to take a lot of tablets each day to reach the correct amount. You will have regular blood tests to check the level. At first you will have blood tests at least once a week. Once the level is stable you may be able to have the tests once a month.

If you forget to take your mitotane don’t take a double dose the next time. Just continue with your usual dose.

You will also need to take a steroid when you are taking mitotane. This is because mitotane lowers the amount of natural steroids produced by the adrenal glands. These steroids help our body to react quickly in stressful situations such as shock, injury or infection.

If you have a severe injury or become very unwell you may need to stop taking mitotane. You will have a card to carry saying that you are taking mitotane. In the case of an accident or sudden illness the card tells the doctor that you are taking mitotane and may need to have steroids.

Medicines, foods, and herbal supplements that contain CYP enzymes can interfere with how mitotane works. Avoid grapefruit and grapefruit juice while you are having treatment. You should let your doctor, nurse or pharmacist know about any other drugs or complementary medicines you are taking, including

• Spironolactone (water tablet)
• St Johns Wort (for depression)
• Blood thinning tablets such as warfarin – you will have more regular blood tests while you are taking mitotane

It is very important that you take tablets according to the instructions your doctor or pharmacist gave you. Whether you have a full or empty stomach, for example, can affect how much of a drug gets into your bloodstream. You should take the right dose, not more or less. And never stop taking a cancer drug without talking to your specialist first.

The side effects associated with mitotane are listed below. You can use the links to find out more about each side effect. For general information, see our cancer drug side effects section.

More than 10 in every 100 people have one or more of these.

• Loss of appetite occurs in 4 out of 5 people (80%)
• Feeling or being sick happens in about 4 out of every 5 people (80%), but is usually well controlled with anti sickness drugs
• Diarrhoea occurs in 1 out of 5 people (20%) – drink plenty of fluid and tell your doctor or nurse if diarrhoea becomes severe, or continues for more than 3 days
• A skin reaction happens in 15 out of 100 people (15%) – you may have a rash or your skin may be dry and itchy and your face may become swollen
• Sadness
• A sore mouth
• Increased risk of getting an infection from a drop in white blood cells happens in between 5 and 25 out of 100 people (5 to 25%) – it is harder to fight infections and you can become very ill. You may have headaches, aching muscles, a cough, sore throat, pain passing urine or feel cold and shivery. Tell your doctor or chemotherapy nurse immediately if you have signs of an infection
• Breast tenderness and swelling – this can be distressing so your doctor may suggest a small dose of radiotherapy before treatment to try to prevent it
• Confusion and difficulty in thinking normally
• Coordination and movement may be more difficult and you may feel dizzy
• Numbness or tingling in fingers and toes can cause difficulty with fiddly things such as doing up buttons – this starts within a few days or weeks and usually goes within a few months of finishing treatment
• Fatigue during and after treatment – you may also have difficulty sleeping
• Muscle weakness
• Liver changes that are very mild and unlikely to cause symptoms – the liver will almost certainly go back to normal when treatment is finished, but you will have regular blood tests to check how well your liver is working
• This drug may have a harmful effect on a developing baby – do talk to your doctor about contraception before having treatment if there is any chance that you or your partner could become pregnant
• Loss of fertility – we don’t know exactly how this drug affects fertility so do talk with your doctor before starting treatment if having a baby is important to you

Fewer than 1 in 100 people have these.

• Eye problems, including blurred vision and clouding
• Blood in the urine
• Increase in the amount of saliva

You won’t get all these side effects. A side effect may get worse through your course of treatment. Or you may have more side effects as the course goes on. This depends on

• How many times you've had a drug before
• Your general health
• How much of the drug you have (the dose)
• Other drugs you are having

Talk to your doctor, pharmacist or nurse about all your side effects so they can help you manage them.

Tell your doctor about any other medicines you are taking, including vitamins, herbal supplements and other over the counter remedies – some drugs can react together.

The information about mitotane side effects is based on only a few trials. And there is little information available at the moment about possible longer term effects that it may cause. Tell your doctor if you notice anything that is not normal for you.

You should not have immunisations with live vaccines while you are having chemotherapy or for at least 6 months afterwards. In the UK, these include rubella, mumps, measles (usually given together as MMR), BCG and yellow fever. You can have other vaccines, but they may not give you as much protection as usual until your immune system has fully recovered from your chemotherapy.

It is safe for you to be in contact with other people who've had live vaccines as injections. There can be problems with oral vaccines, but not many people in the UK have oral vaccines now. So there is usually no problem in being with any baby or child who has recently had any vaccination in the UK. You might need to make sure that you aren't in contact with anyone who has had oral polio, cholera or typhoid vaccination recently, particularly if you live abroad.