Temozolomide (Temodal)

• What temozolomide is
• How you have treatment
• Common side effects
• Occasional side effects
• Important points to remember
• Immunisations and chemotherapy

Temozolomide is a chemotherapy drug doctors use to treat brain tumours. It is a type of drug known as an alkylating agent and works by stopping cancer cells from making new DNA. If they cannot make DNA, they can’t split into 2 new cancer cells.

You take temozolomide as a capsule that you swallow. Take it on an empty stomach (for example, 1 hour before or 2 hours after meals). It is important to store these capsules in a safe place away from children. Return any unused medicine to your pharmacy.

You usually have chemotherapy as a course of several cycles of treatment. There is more about how doctors plan chemotherapy in CancerHelp UK.

Temozolomide side effects are listed below. You can use the links to find out more about each side effect or click on search at the top of any page.

With this drug, many people have a temporary drop in the number of blood cells made by the bone marrow, leading to the following side effects

• Increased risk of getting an infection from a drop in white blood cells - 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. 
• Tiredness and breathlessness due to a drop in red blood cells (anaemia) - you may need a blood transfusion
• Bruising more easily due to a drop in platelets - you may have nosebleeds, bleeding gums after brushing your teeth, or lots of tiny red spots or bruises on your arms or legs (known as petechia).

These effects on your bone marrow can begin about 7 days after each treatment and usually go back to normal after about 21 to 28 days. Some of these side effects can be life threatening, particularly infections.  You should contact your doctor if you have any of these side effects.  Your doctor will check your blood counts regularly to see how well your bone marrow is working

Other common side effects include

• Fatigue during and after treatment - most people find their energy levels are back to normal within 6 months to a year
• Feeling or being sick can start within a couple of hours of having the capsules and last until the next day - take anti-sickness medicines regularly and tell your doctor if they aren't working, as there will be others you can try
• Loss of appetite
• Taste changes
• Diarrhoea or constipation - drink plenty of fluids if you have either of these and tell your doctor if it doesn't get better within a few days
• This drug may harm a baby developing in the womb so it is not advisable to become pregnant or father a child if you are having this drug - talk about contraception to your doctor before having the treatment if there is any chance you or your partner could become pregnant
• Women may stop having periods (amenorrhoea) but this may only be temporary
• Loss of fertility may happen with this drug - you may not be able to get pregnant or father a child after treatment so it is important to talk to your doctor before starting treatment if you are concerned

Some people have the following side effects

• An itchy rash
• Headache or dizziness
• Fever and chills - this does not usually last for long
• Hair loss - you may have some thinning within a month of starting treatment but your hair will grow back when the treatment is over

The side effects above may be mild or more severe. A side effect may get better or worse through your course of treatment, or more side effects may develop as the course goes on. This depends on

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

Some side effects are inconvenient or upsetting but not damaging to your health.

Some side effects are serious medical conditions and need treating. Where we have urged you to contact your doctor, this is because

• Your side effect may need treating
• Your drug dose may need reducing to try to prevent the side effect

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.

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

Your chemotherapy nurse, clinic or ward nurse will give you a contact number. You can ring if you have any questions or problems. They can give you advice or reassure you. If in doubt, call them.

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 perfectly 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 no one in the UK is given an oral vaccine now. So there is no problem in being with any baby or child who has recently had any vaccination in the UK. If you live abroad, you might need to make sure that you aren't in contact with anyone who has had oral polio or oral typhoid vaccination recently.