Temozolomide (Temodal ®)
Temozolomide is a chemotherapy drug used to treat a type of brain tumour called a glioma. Temozolomide comes in capsules. You may have it on its own or with radiotherapy.
This information should ideally be read with our general information about chemotherapy and the type of cancer you have.
How temozolomide is givenBack to top
Temozolomide comes in capsules, so you can take it at home. During treatment, you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse at the clinic. This is who we mean when we mention doctor or nurse in this information.
Before and during treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that it is okay for you to have chemotherapy.
You will also see a doctor or nurse before you have chemotherapy. They will ask you about how you have been feeling. If your blood results are alright on the day of your treatment, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.
Taking your temozolomide capsules
Before you leave hospital, the nurse or pharmacist will give you the capsules to take at home. Always take your capsules exactly as explained. You may be given capsules of different strengths. Be sure you know how many capsules to take. This is important to make sure they work as well as possible for you.
You should not have anything to eat an hour before, or an hour after, taking the capsules. They must be swallowed whole with a glass of water. They should not be chewed. Take the capsules at the same time every day.
If you are sick just after taking the capsules, contact the hospital. Do not take another dose.
If you forget to take the capsules, you should take the missed dose as soon as possible within the same day. If a full day has gone by, let your doctor or nurse know. Do not take a double dose unless your doctor tells you to.
Other things to remember about your capsules:
- Keep them in their original package at room temperature and away from heat and direct sunlight.
- Keep them safe and out of the reach of children.
- If your treatment is stopped, return any remaining capsules to the pharmacist.
- You and any carers should use disposable gloves when handling the capsules.
- The capsules should never be opened or crushed. If they become damaged, avoid getting the powder on your skin or in your eyes. If you accidentally get some on your skin or in your eyes, you should wash immediately.
Your course of chemotherapy
You have chemotherapy as a course of several sessions (or cycles) of treatment over a few months. Your course will depend on whether you are having radiotherapy. Your doctor or nurse will tell you more about this and the number of cycles you are likely to have.
Before you go home, the nurse or pharmacist will give you anti-sickness drugs and other medicines to take home. Take all your capsules and tablets exactly as they have explained to you.
Possible side effects of temozolomideBack to top
We explain the most common side effects of temozolomide 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. When your treatment has finished, the side effects will start to improve.
Serious and life-threatening side effects
Sometimes cancer drugs can result in very serious side effects which, rarely, 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 at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.
More information about temozolomide
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
Temozolomide 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 – these can include feeling shaky, a sore throat, a cough, diarrhoea or needing to pass urine a lot.
The number of white blood cells usually increases steadily and returns to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cell numbers are still low, your doctor may delay your treatment for a short time.
Bruising and bleeding
Temozolomide 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. Some people may need a drip to give them extra platelets.
Anaemia (low number of red blood cells)
Temozolomide 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).
This may happen in the first few days after chemotherapy. Your doctor can prescribe effective anti-sickness drugs to prevent or reduce sickness or vomiting.
If the sickness is not controlled, or if it continues, tell your doctor. They can prescribe other anti-sickness drugs that may work better for you.
Temozolomide may make you constipated and cause tummy pain. It will help to drink at least two litres of fluids (three and a half pints) every day. Try to eat more foods that contain fibre such as fruit, vegetables and wholemeal bread. Also try to take regular gentle exercise.
If you haven’t had a bowel motion for two days, contact the hospital for advice. Your doctor can prescribe laxatives to help you. Always contact the hospital straight away if you are constipated and have tummy pain or are being sick.
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 them. You can also buy them from chemists.
Feeling very tired is a common side effect of temozolomide, especially towards the end of treatment and for some weeks afterwards. 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.
Headaches and seizures
Temozolomide may cause headaches. If you get headaches, let your doctor or nurse know. They can give you painkillers to help relieve them. Rarely, temozolomide can cause seizures (fits). If you notice any of these symptoms, tell your doctor or nurse straight away. They may make some changes to your treatment.
If you notice these effects, it’s important not to drive or operate machinery.
Raised blood sugar levels
Temozolomide may raise the levels of sugar in your blood. Your nurse will check your blood regularly for this. They may also test your urine for sugar. Symptoms of raised blood sugar include feeling thirsty, needing to pass urine more often and feeling tired. If you have these symptoms, tell your doctor or nurse.
If you have diabetes, your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this. You may need to change your dose of insulin or diabetes tablets.
Your hair will thin or you may lose all the hair from your head. This usually starts after your first or second cycle of chemotherapy. It is almost always temporary and your hair will grow back after chemotherapy ends. It is important to cover your head to protect your scalp when you are out in the sun. Your nurse can give you advice about coping with hair loss.
Temozolomide may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. Temozolomide can cause a rash, which may be itchy. If you’ve had radiotherapy (either recently or in the past), the area that was treated may become red or sore.
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.
Shortness of breath
Temozolomide can cause changes to the lungs. Always tell your doctor if you develop wheezing, a cough, a fever or if you feel breathless. You should also tell them if any existing breathing problems get worse. They can arrange for you to have tests to check your lungs.
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 temozolomideBack to top
Blood clot risk
Cancer increases the chance of a blood clot (thrombosis) and chemotherapy can further increase this risk. 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 medicinescan be harmful to take when you are having temozolomide. This includes some medicines you can buy in a shop or chemist.
Chemotherapy may affect the way drugs such as sodium valproate and clozapine work.
If you are taking medicines to treat seizures (fits), you should not drink any alcohol while you are taking the temozolomide capsules.
Tell your doctor about any medicines you are taking, including over-the-counter drugs, complementary therapies and herbal drugs.
Temozolomide can affect your fertility (being able to get pregnant or father a child). If you are worried about this, talk to your doctor or nurse before treatment starts.
Your doctor will advise you not to become pregnant or father a child while taking temozolomide. 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 discuss this with your doctor or specialist nurse.
If you have sex during the course of your chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluid.
Women are advised not to breastfeed during treatment and for a few months after. This is in case there is chemotherapy in the 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 temozolomide. Tell them the name of your cancer doctor so they can ask for advice.
Always tell your dentist you are taking temozolomide.
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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