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Temozolomide side-effects

The chemotherapy drug temozolomide might have side-effects during treatment. Common side-effects of temozolomide are nausea, fatigue, constipation, and more. There are also less common and very rare side effects, which we discuss here.

Short summary

Side effects of temozolomide – Dan’s story

Like all chemotherapy drugs, temozolomide (TMZ) may cause one or more side-effects. You may find it helpful to ask your doctor for more information about the temozolomide side-effects you might experience before you begin taking TMZ.

On this page we’ll discuss some of the possible side-effects of temozolomide. But, it’s important to remember that, while you might experience one or even a few, it’s unlikely that you’ll experience all of them.

It’s also important to note that if other drugs are being used in your treatment, they could have their own side-effects, which won’t be covered here. So, it’s always best to talk about your side-effects with your doctor, nurse, or pharmacist. They might be able to help reduce those side-effects.

On this page, we’ll cover:

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What are the side-effects of temozolomide?

This list covers the more common TMZ side-effects but is not exhaustive. You can find full, detailed drug information on temozolomide in the electronic Medicines Compendium (eMC).

Common temozolomide side-effects

Some of the temozolomide side-effects that are commonly experienced are:

Fatigue

People have reported feeling tired during treatment and for up to 12 months afterwards.

Nausea and vomiting

Feeling or being sick is one of the common temozolomide side-effects. Doctors usually prescribe anti-emetic (anti-sickness) medication to help manage nausea and vomiting.

Constipation

If you suffer from TMZ-induced constipation, you can ask your doctor for medication that might help manage this.

Loss of appetite

If you’re experiencing a lack of appetite as a result of TMZ treatment, you can ask to speak to a dietitian. They can monitor your weight and give you advice on how to supplement your diet.

Amenorrhoea (an absence of periods)

Treatment including TMZ may cause you might to temporarily stop having periods.

Infection

TMZ treatment may lower the number of white blood cells you have in your body. These cells help fight infections and, as a result, your resistance to infection may be weakened.

If you’re being treated with TMZ, you might be advised to avoid individuals with infections as much as possible. You should be given written information about what to do and who to contact if you get a temperature, sore throat or other signs of an infection.

You should tell your oncologist immediately if you experience any symptoms of infection. These can vary depending on where the infection is, but could be symptoms like a sore throat, high temperature, aching muscles, a headache, and shivering.

Less common temozolomide side effects

In some cases, TMZ can cause more serious side-effects.

Low platelet count

TMZ treatment can cause a low platelet count. Platelets help the blood clot, so a low platelet count can significantly increase the risk of bleeding.

If the results of blood tests show a low platelet count, your doctor might consider delaying your treatment or reducing your dose.

In rare cases, TMZ can cause a more serious blood condition known as pancytopenia. Pancytopenia is when red and white blood cells, as well as platelets, are lower than normal. In such cases, you might receive blood and platelet transfusions (injections of blood) and G-CSF support (injections which help boost your immunity).

Loss of fertility

In some cases, one of the side effects of temozolomide can be infertility in men or women. Before starting treatment with TMZ, your doctor should discuss available options for preserving your fertility with you. If relevant, your doctor will also discuss with you effective birth control methods (contraception), as TMZ may also cause birth defects.

Pneumonia

If you’re being treated with TMZ, you have an increased risk of developing a type of pneumonia known as pneumocystis jirovecii pneumonia (PCP).

This is an infection of the lungs, caused by a fungus that’s common in the environment. It can cause infection in people with weakened immune systems. For this reason, your oncologist may prescribe a preventative antibiotic to reduce your chance of getting this infection.

You should inform your doctor immediately if you experience any of the symptoms of PCP: shortness of breath, dry cough, fever and/or chills.

Very rare side-effects of temozolomide

In very rare cases, prolonged use of TMZ can cause:

Secondary cancer

An example of this is leukaemia. Leukaemia is an overproduction of white cells.

Another example is myelodysplastic syndrome. This is where the production of normal bloods cells by the bone marrow is disrupted.

Liver damage

TMZ can sometimes affect the liver and create a condition called toxic hepatitis. This can lead to liver damage and sometimes even liver failure. If you experience any of the symptoms of toxic hepatitis, you should speak to your doctor. This way you can be monitored and your condition can be treated.

Helping you recover from chemotherapy

If you’d like some more information on chemotherapy recovery, you can sign up to our email series using the form below.

It might be helpful to bring a paper and pen with you on the day of your appointment, so you can jot down important questions and their answers. 

You should also bring a list of all medications you’re taking, including prescription and non-prescription medications, vitamins, mineral and herbal remedies.

  • What should I do if I miss a dose or take too much by mistake?
  • How do I manage any side effects TMZ may cause?
  • If I begin to feel ill, do I visit my GP, make an appointment at clinic or call 999?
  • What are the most common side effects of temozolomide and what should I expect?
  • What do I do if I struggle with swallowing the tablets? Can I take it in another form?
  • What should I do if friends have infections?
  • Are there any inoculations or vaccines I should avoid taking?
  • Are there any inoculations or vaccines you recommend I should get?
  • Will my GP be informed of my treatment? How will they be involved in my treatment?

More information

Chemotherapy for adults factsheet – PDF

Download our printable information about chemotherapy.

Chemotherapy for adults – Clear print factsheet – PDF

Download our printable information about chemotherapy in a clear print format.


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