Temozolomide (Temodal ®)
Temozolomide (Temadol ®) is a chemotherapy drug used to treat a type of brain tumour called a glioma. Temozolomide comes in capsules and you may have it alone or with radiotherapy.
This information should ideally be read with our general information about chemotherapy and your type of cancer.
How temozolomide is given
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You will usually have temozolomide in a chemotherapy day unit. A chemotherapy nurse will give it to you. 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.
Before or on the day of 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. 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 chemotherapy 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. 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 and should not be opened or chewed. They should be taken at the same time every day.
Other things to remember about your capsules:
Keep them in their original package at room temperature, away from heat and direct sunlight.
Keep them safe and out of the reach of children.
Return any remaining capsules to the pharmacist if your treatment is stopped.
Carers should use disposable gloves when handling the capsules.
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 tablets exactly as they have explained to you.
Possible side effects of temozolomide
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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. 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
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 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, 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 cells 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. 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. 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).
Your doctor will prescribe anti-sickness (anti-emetic) drugs to help prevent or control any 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.
Temozolomide may make you constipated and cause tummy pain. Drinking at least two litres of fluids (three and a half pints) every day will help. Try to eat more foods that contain fibre (such as fruit, vegetables and wholemeal bread) and 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 some of these and you can buy them from chemists.
Feeling very tired is a common side effect. It’s often worse towards the end of treatment and for some weeks after it’s over. 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.
Headache and seizures
Temozolomide may cause headaches. Let your doctor or nurse know if you get headaches. They can give you painkillers to help relieve them. Rarely, this treatment can cause seizures (fits). 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.
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. Tell your doctor or nurse if you have these symptoms.
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
Temozolmide can cause changes to the lungs. Always tell your doctor if you develop wheezing, a cough, fever or feel breathless. You should also tell them if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.
Other information about temozolomide
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Blood clot risk
Cancer increases the chance 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.
Chemotherapy may affect the way drugs such as sodium valproate and clozapine work.
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, you can talk to your doctor or nurse 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 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 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. 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 information from a number of reliable sources, including:
Andrew James Parker. Temodar: Review. The Musella Foundation For Brain Tumor Research & Information. Updated June 2000. Available from: virtualtrials.com (accessed September 2013)
electronic Medicines Compendium (eMC). (accessed September 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 September 2013).
With thanks to Christine Clarke, Lead Pharmacist Oncology & Haematology, who reviewed this edition.
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