Temozolomide (Temodal)

 
 

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Your doctor has recommended a chemotherapy drug called Temozolomide as one of the treatments for your brain tumour. It is usually given as a oral tablet once a day for 5 days repeated every 28 days. The exact dose (number of capsules - 5mg each) will be calculated by measuring your height and weight, and calculating your surface area. Swallow the capsules whole with a drink. Try to take the tablets on an empty stomach, for example, at least one hour before breakfast. It is best to take your tablets at approximately the same time each day. Do not chew the capsules. If a capsule is damaged avoid contact of the powder with your skin, eyes and nose. If you do accidentally get some in your eyes, wash with warm water.

Before each course of chemotherapy you will see a doctor and have a blood test. If your blood count is low then chemotherapy may be delayed or the dose reduced. After 2-3 cycles of chemotherapy your doctor would expect to see an improvement in your condition physically, in terms of quality of life and a reduction in size of the tumour on a scan.

We have outlined side-effects you may experience during treatment. It is important that you feel free to ask questions so that you understand what to expect and what to do. Occasionally people have rare side-effects which are not expected or mentioned on this sheet.  If in doubt ask!

Side effects

Nausea & sickness; Despite the anti-sickness medication given with your chemotherapy and for a few days afterwards, some nausea may occur. This is usually associated with reduced appetite and in some cases vomiting. If marked you should contact the cancer unit for help as its important you do not get dehydrated. Some cancer units prescribe anti-sickness suppository to take home and should be used if sickness occurs. In general, anti-sickness tablets should be taken regularly and are usually successful, but if you do have problems, different  tablets can be prescribed for the next cycle. Some self help tips may also be useful.

If your blood count falls you may experience the following:

  • White Blood Cells (WBC). Shivering or shaking attacks of fever. If you feel hot or unwell check your temperature.  If it is 38°C (100F) telephone the Hospital and they will advise you. Do not take Paracetamol or Aspirin if you have a temperature.  A raised temperature indicates infection which could be life threatening. If you have a temperature or feel unwell contact your hospital immediately.

  • Haemoglobin (Hb) Tiredness, lethargy, breathlessness, dizziness (particularly on standing) and pale facial colour. Occasionally patients require a blood transfusion

  • Platelets If you notice any bleeding, i.e. nose bleeds, unexplained bleeding, bruising or persistent headaches contact the Hospital immediately.

Other advice on paracetamol; As mentioned above, if you have a temperature and feel unwell you may have an infection and may need treatment in hospital, we advise not to take paracetamol in this situation as it may mask your temperature, give false reassurance and delay you presenting to hospital for treatment. Taking paracetamol can otherwise be used with discretion. If for example you have a headache or a mild pain but are otherwise feel well and your temperature is normal paracetamol can be used provided you check your temperature before each dose and allow a full six hours before each administration.

Weight gain; Over the entire course of chemotherapy many patients complain of weight gain. This is caused by a combination of the steroids increasing the appetite, the fatigue causing lack of mobility and the mild nausea often encouraging to nibble rather than eating correct meals - In order to prevent this we recommend regular light exercise and be aware of your dietary intake. 

Weight loss may also be experienced by some patients during their course of chemotherapy , in these cases dietary advice should be sought.

Hair loss; This chemotherapy does not usually cause hair loss. Thinning may occur 3-4 weeks after the first course, but is rarely enough to require a wig but if you do require one (perhaps there has been hair loss from previous radiotherapy) we will organise an appointment with our wig specialist. (NHS prescription charge, prices are approximately £55 for an acrylic wig, £140 for half real hair wig and  £205 for a full real hair wig). 

Occasionally patients develop a rash which may be itchy but this usually stops on its own. If this occurs please contact your clinic.

Sore mouth; You may have a sore mouth and an altered taste for food after chemotherapy and it is important that you maintain good oral hygiene. A soft baby toothbrush and a mouthwash may help. If you develop mouth ulcers you must contact your hospital and they will prescribe special mouthwashes to help. 

 

Fertility may be affected by chemotherapy, in both men and women.  It is important to discuss fertility with your doctor before starting treatment.  For pre-menopausal women, chemotherapy may affect your periods. They may become heavier, lighter or may stop. In some women this may be permanent, causing menopausal symptoms.You should not become pregnant during chemotherapy, as it will damage a growing baby. You should still take contraceptive precautions even if your periods have stopped, as you could still become pregnant.  Men must also use a barrier contraceptive whilst receiving chemotherapy as sperm is damaged  by chemotherapy.  

Fatigue; All chemotherapy can cause fatigue. As your treatment progresses you will experience this. You may find that gentle exercise such as a short walk each day (if you are not working) may help.  Fatigue and malaise may last up to 2-3 months (or longer) after the end of chemotherapy.  

Steroids; This chemotherapy is often is given with steroids (Dexamethasone) to help prevent sickness. Steroids have some side effects, including fluid retention, weight gain, wakefulness and sometimes agitation. If you suffer from indigestion you may be given tablets to prevent this. If patients are prone to "spots" or acne, diabetes or high blood pressure these can be made worse. Steroid taken long term also have other side effects such as thinning of the bones and weakness in the muscles.

 

Sore eyes; The front of the eyes (cornea) can occasionally feel dry and sticky, especially first thing in the morning. This usually comes on later in the course and can cause some redness and discomfort. Eye drops such artificial tears can be bought over the counter or prescribed by your medical team. 

 

Nails; The grow of the nails can be impaired by chemotherapy. The amount of damage can vary but in most case there will be some slight discolouration and indentation seen in ridges across the nail beds - a bit like the rings of a tree, each representing an individual chemotherapy cycle. Occasionally the damage can be more troublesome, causing pain and breakdown of the nail bed causing it to lift and separate, possibly even leading to a total loss of the nail. Eventually after chemotherapy has finished the nail will grow back normally.

 

Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.


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