Temozolomide (Temodal®)

Temozolomide is a chemotherapy drug used to treat a type of brain tumour called a glioma. It can also be used to treat a type of brain tumour in young people called an anaplastic astrocytoma.

You may have it on its own or with radiotherapy. This information should ideally be read with our general information about chemotherapy and brain tumours.

Temozolomide is given as capsules. You usually have it as an outpatient. Your cancer doctor or nurse will tell you how often you will have it.

Like all chemotherapy drugs, temozolomide can cause side effects. Some of the side effects can be serious, so it is important to read the detailed information below.

Your healthcare team can give you advice on how to manage any side effects. Tell your doctor or nurse straight away if you:

  • have a temperature
  • feel unwell
  • have severe side effects, including any we do not mention here.

Rarely, side effects may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.

If you need medical attention for any reason other than cancer, always tell the healthcare staff that you are having this treatment.

What is Temozolomide (Temodal®)?

Temozolomide is a chemotherapy drug used to treat a type of brain tumour called a glioma. It can also be used to treat a type of brain tumour in young people called an anaplastic astrocytoma.

It is best to read this information with our general information about chemotherapy and the type of cancer you have.


How Temozolomide is given

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse. This is who we mean when we mention a 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 your blood cells are at a safe level for you to have chemotherapy.

You will see a doctor or nurse before you have chemotherapy. They will ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.

Your course of chemotherapy

Temozolomide comes in capsules or tablets, so you can take it at home. Temozolomide may be given on its own, or with other chemotherapy drugs.

Chemotherapy is usually given as a course of several cycles of treatment over a few months. Your nurse or doctor will discuss your treatment plan with you.

The nurse or pharmacist will give you the capsules or tablets to take home. Always take them exactly as explained. This is important to make sure they work as well as possible for you. You may be given capsules of different strengths.

Your nurse or pharmacist may also give you anti-sickness drugs and other medicines to take home. Take all your capsules or tablets exactly as they have been explained to you.

Taking temozolomide capsules

You should not have anything to eat an hour before, or two hours 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 forget to take the capsules or tablets, 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 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 capsules or tablets, contact the hospital. Do not take another dose.

If your treatment is stopped, return any unused capsules or tablets to the pharmacist.


About side effects

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 haven’t 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.

More information

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.


Common side effects

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 called neutropenia.

If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have if:

  • your temperature goes over 37.5°C (99.5F)
  • you suddenly feel unwell, even with a normal temperature
  • you have symptoms of an infection.

Symptoms of an infection include:

  • feeling shivery
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine often.

It is important to follow any specific advice your cancer treatment team gives you.

The number of white blood cells will usually return to normal before your next treatment. You will have a blood test before having more chemotherapy. If your white blood cell count is low, your doctor may delay your treatment for a short time.

Bruising and bleeding

Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor or nurse if you have any bruising or bleeding that you can’t explain. This includes:

  • nosebleeds
  • bleeding gums
  • tiny red or purple spots on the skin that may look like a rash.

Some people may need a drip to give them extra platelets. This is called a platelet transfusion.

Anaemia (low number of red blood cells)

Chemotherapy 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. This is called a blood transfusion.

Feeling sick

You may feel sick in the first few days after chemotherapy. Your doctor will give you anti-sickness drugs to help prevent or control sickness. 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 and eat small amounts often. If you continue to feel sick, or if you vomit more than once in 24 hours, contact the hospital as soon as possible. They will give you advice and may change the anti-sickness drug to one that works better for you.

Constipation

This treatment can cause constipation. Here are some tips that may help:

  • Drink at least two litres (three and a half pints) of fluids each day.
  • Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
  • Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital for advice. Your doctor can give you drugs called laxatives to help.

Loss of appetite

This treatment can affect your appetite. Do not worry if you don’t 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.

Feeling tired

Feeling tired is a common side effect. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy. If you feel sleepy, do not drive or operate machinery.

Muscle or joint pain

You may get pain in your muscles or joints for a few days after chemotherapy. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better. Having warm baths and taking regular rests may help.

Headaches and Seizures

This treatment may cause headaches. If this happens, tell your doctor or nurse. They can give you painkillers.

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 is 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.

Hair loss

Your hair will get thinner or you may lose all the hair from your head. You may also lose your eyelashes, eyebrows or other body hair. Hair loss usually starts after your first or second treatment.

Your nurse can talk to you about ways to cope with hair loss. There are ways to cover up hair loss if you want to. It is important to cover your head to protect your scalp when you are out in the sun.

Hair loss is almost always temporary and your hair will usually grow back after treatment ends.

Skin changes

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 have had radiotherapy 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.

Effects on the lungs

This treatment can cause changes to the lungs. Tell your doctor if you develop: 

  • a cough
  • wheezing
  • a fever (high temperature)
  • breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.


Other information about temozolomide

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

  • pain, redness or swelling in a leg or arm
  • breathlessness
  • chest pain. 

If you have any of these symptoms, contact a doctor straight away. 

A blood clot is serious, but can be treated with drugs that thin the blood. Your doctor or nurse can give you more information.

Other medicines

Some medicines can 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.

Fertility

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

Contraception

Your doctor will advise you not to get pregnant or father a child while having this treatment. The drugs may harm the developing baby. It is important to use effective contraception during your treatment.

Sex

If you have sex during this course of chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.

Breastfeeding

Women are advised not to breastfeed while having this treatment and for some time afterwards. This is because the drugs could be passed to the baby through breast milk.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses that 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.