This leaflet provides information on a course of chemotherapy called temozolomide (sometimes called Temodal). The leaflet will explain what this is and when and how it is given. It will also tell you about common side effects you may experience. Contact telephone numbers and details of how to obtain further information on temozolomide are given at the end of the leaflet.
This leaflet should be read alongside the ‘General information for patients receiving chemotherapy’ leaflet. If you haven’t received this leaflet then please ask your nurse for a copy.
What is temozolomide chemotherapy?
Temozolomide is a chemotherapy treatment which is given as capsules.
Why am I having temozolomide chemotherapy?
Your doctor has prescribed this chemotherapy because research has shown it can be effective in treating your type of cancer.
How often will I receive my chemotherapy?
Temozolomide may be given in two ways. Your doctor or nurse will explain how your treatment will be given.
1. Combined radiotherapy and chemotherapy
You will receive your radiotherapy every weekday (Monday – Friday) for 6 weeks. We will give you a separate information booklet that tells you more about your radiotherapy.
During your radiotherapy treatment you will take the temozolomide capsules every day (7 days a week) for 6 weeks. Every week you will have a blood test and we will give you a supply of temozolomide capsules for that week.
We will also give you a course of antibiotics called septrin (also called co-trimoxazole). This is to prevent a type of chest infection which may occur in patients having combined treatment. You need to take the antibiotics 3 times a week, usually Monday, Wednesday and Friday.
Please tell us if you are allergic to septrin so we can give you a different antibiotic.
After you have finished your radiotherapy you will have a 4 week break then continue to take the temozolomide capsules as described below.
2. Chemotherapy alone
If you have finished your radiotherapy or are having chemotherapy on its own you will take the temozolomide capsules for five days then have 23 days rest. This is known as a cycle of treatment. You may have up to 6 cycles of treatments (24 weeks in total).
You may have an MRI scan during or after your treatment. This is to check the effect of the chemotherapy on your tumour. Your doctor will discuss this with you before you start chemotherapy.
How often will I visit the hospital?
You will see your nurse or doctor in the outpatient clinic once every 4 weeks. You will have a blood test and we will check how you are feeling and discuss any problems you may have. This is so we can check how the chemotherapy is affecting you. If your blood results are ok, your chemotherapy can be prescribed.
How long will I be in the hospital?
You may be in the hospital for up to 3 hours.
Where is my appointment?
Your appointment is in one of the outpatient departments at Velindre Cancer Centre.
Can I bring relatives and friends with me?
You are welcome to bring someone to stay with you during your treatment. Space is limited so there is not usually room for more than one person. Treatment areas are not suitable for young children.
How should I take the temozolomide capsules?
The capsules must be taken on an empty stomach, 2 hours after eating or one hour before. They should be swallowed whole with a glass of water. They must not be chewed or crushed.
It is important that you wash your hands thoroughly after taking your capsules.
If you are having radiotherapy, you should take the temozolomide capsules every night at roughly the same time. If you are concerned about what to do please discuss this with your specialist nurse or radiographer.
How should I store the temozolomide capsules?
Your capsules should be stored in their original packaging and in a safe place away from children. They should be kept in a cool dry place.
Any unused capsules should be returned to the hospital Pharmacy or your local chemist for safe disposal.
What are the possible side effects?
Most patients don’t have many side effects with this type of chemotherapy. The doctors, nurses and pharmacists can give you advice or answer any questions you may have.
Hair loss
If you are having radiotherapy you will almost certainly lose your hair, especially to the treated area of your head. This may occur during or after Radiotherapy treatment. This may be permanent to the area where you have radiotherapy. If you are just receiving chemotherapy some people may experience some hair thinning or hair loss. We have a leaflet that tells you more about coping with hair loss. Please ask your nurse if you would like a copy.
Sickness
Some people experience nausea (feeling sick) or sickness with this treatment. We will give you anti-sickness medicines which are usually extremely effective.
If you are sick more than once in 24 hours despite taking regular anti-sickness medicine, you should stop taking your temozolomide capsules and contact Velindre Cancer Centre for advice. The telephone number is at the end of the leaflet.
Infection
You are at an increased risk of picking up infections because your white blood cells which help fight infections can be reduced by this treatment.
If you develop an infection whilst your white blood cells are low, you are at risk of sepsis, this can be life threatening.
Contact Velindre Cancer Centre immediately if you develop any signs of infection, for example flu like symptoms or a temperature above 37.5°centigrade or below 35.5°centigrade. The telephone number is at the end of the leaflet.
Bruising
Temozolomide can reduce the production of platelets (which help the blood to clot). This will increase your risk of bruising or bleeding. If you notice any bruising on your body or bleeding such as nosebleeds or bleeding from your gums you should contact Velindre Cancer Centre for advice. The telephone number is at the end of the leaflet.
Effects on your bowels
Temozolomide can cause both constipation and diarrhoea. If you have constipation it may be relieved by drinking plenty of fluids and eating lots of fibre. Your doctor can prescribe medication to relieve constipation.
If you have diarrhoea it is important that you drink plenty of fluids. Medication is available to control diarrhoea. If you have 4 or more bowel movements in 24 hours above what is normal for you, you should stop taking your temozolomide capsules and contact Velindre Cancer Centre immediately. The telephone number is at the end of the leaflet.
Tiredness and fatigue
Chemotherapy can make you feel more tired than usual. It is important to listen to your body and rest if you need to, but carry out your normal activities if you feel able. Some people find it beneficial to take gentle exercise as well as taking rest. Temozolomide may make you want to sleep more than usual.
Sore mouth
Your mouth may become sore or you may notice small ulcers. Please follow the advice on caring for your mouth in the general chemotherapy leaflet. Your doctor may prescribe mouthwashes or medication to prevent or clear any infection.
Fertility
Your ability to have children during and following this treatment can be affected. You will have the opportunity to discuss this with your doctor before the treatment starts.
Women sometimes find that chemotherapy treatment can affect their periods. These could become heavier, lighter or even stop altogether.
It is important that you do not become pregnant or father a child whilst having chemotherapy treatment.
Blood clots
A diagnosis of cancer can increase your risk of developing a blood clot (thrombosis), and having cancer treatment may increase this risk further. It is important to tell your doctor immediately if you have symptoms such as pain, redness and swelling in your leg, or breathlessness and chest pain.
Blood clots can be very serious. However, most clots can usually be successfully treated with drugs to thin the blood. Your doctor or nurse can give you more information.
Other side effects
Some patients will experience headaches. If they occur try taking whatever painkillers you normally take for a headache. If this doesn’t help please contact Velindre Cancer Centre for further advice. The telephone number is at the end of the leaflet.
Some patients may develop a rash. If this occurs we recommend using a moisturising cream. If the rash is itchy or uncomfortable please contact Velindre Cancer Centre. The telephone number is at the end of the leaflet.
A small number of patients develop a dry cough and feel a little short of breath. If this occurs please tell you doctor at your next clinic visit.
Sometimes cancer drugs can have very serious side effects which rarely can be life threatening. It is important to inform Velindre cancer centre if you are concerned about any side-effects.
A diagnosis of cancer can increase your risk of developing a blood clot (thrombosis), and having cancer treatment may increase this risk further. It is important to tell your doctor immediately if you have symptoms such as pain, redness and swelling in your leg, or breathlessness and chest pain.
Manufacturer’s patient information leaflets
Velindre leaflets provide information about very common and commonly reported side-effects (we are unable to list all of the common side effects), for more information regarding these and the less common side-effects please refer to the manufacturers patient information leaflets, obtained from Velindre pharmacy and/or on the internet at www.medicines.org.uk. Sometimes patients may find these leaflets difficult to read however. Please ask if you would like a copy from your doctor or from Velindre pharmacy
Contact telephone numbers
Velindre Cancer Centre 029 2061 5888
Ask for the treatment helpline if you are unwell at home and need immediate advice at any time of the day or night. For example you should phone if you:
Pharmacy department 029 2061 5888 ext 6223
Mon – Fri 9am – 5pm for queries about your medicines
Tenovus freephone 0808 808 1010
cancer helpline
This information is also available in Welsh
This leaflet was written by health professionals. The information contained in this leaflet is evidence based. It has been approved by doctors, nurses and patients. It is reviewed and updated every 2 years.