Capecitabine and temozolomide (CAPTEM)

Capecitabine and temozolomide are chemotherapy drugs. This combination is also known as CAPTEM. You pronounce the drug names as:

• ka-pe-site-a-been
• teh-moh-zoh-loh-mide

It is a treatment for neuroendocrine tumours (NETs). NETs are a type of neuroendocrine cancer.

How do capecitabine and temozolomide work?

These chemotherapy drugs destroy quickly dividing cells, such as cancer cells.

How do you have capecitabine and temozolomide?

You take capecitabine as a tablet. You swallow it whole with a glass of water. You usually take the tablets twice a day, about 12 hours apart. You should take them with food or within 30 minutes of finishing a meal.

Your doctor will tell you the amount (dose) of capecitabine you need to take. You might have two different strengths of tablets to make up the correct dose.

You take temozolomide as a capsule. You swallow it whole with a glass of water. You can take the capsules twice a day, about 12 hours apart or once a day. Your doctor will tell you how to take them. You should take the capsules on an empty stomach, for example, an hour before you plan to eat a meal.

Taking your tablets or capsules

Whether you have a full or empty stomach can affect how much of a drug gets into your bloodstream.

You should take the right dose, not more or less.

Talk to your healthcare team before you stop taking a cancer drug, or if you have missed a dose.

How often do you take capecitabine and temozolomide?

You take capecitabine and temozolomide as cycles of treatment. This means you take the drugs and then have a rest to allow your body to recover.

Each cycle lasts 4 weeks (28 days). You usually have up to 13 cycles. Or you have it for as long as it works and the side effects are not too bad.

You have each cycle in the following way:

You then start the next cycle of treatment.

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

Before treatment starts you may have a blood test to check for viruses such as hepatitis B, hepatitis C, and HIV . This is called a viral screen.

It’s important for your doctor to know if you have had any of these viruses. This is because this treatment can weaken your immune system and can cause the virus to become active again (reactivation). 

Before starting treatment with capecitabine you have a blood test to check levels of an enzyme called dihydropyrimidine dehydrogenase (DPD). A low DPD level means you are more likely to have severe side effects from these drugs. So you may start treatment with a lower amount (dose) of the drug or have a different treatment. Your doctor, pharmacist or nurse will talk to you about this.

You will have an ECG before starting treatment. Thereafter, you may have it if needed.

What are the side effects of capecitabine and temozolomide?

Side effects can vary from person to person. They also depend on what other treatment you are having. 

When to contact your team

Your doctor, pharmacist or nurse will go through the possible side effects. They will monitor you closely during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

• you have severe side effects

• your side effects aren’t getting any better

• your side effects are getting worse

• the side effects are affecting your daily life

Early treatment can help manage side effects better. 

We haven't listed all the side effects here. Talk to your healthcare team if you have any new symptoms that you think might be a side effect of your treatment.

Remember it is very unlikely that you will have all of these side effects, but you might have some of them at the same time.

Common side effects

These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:

Increased risk of getting an infection

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, cough, headaches, feeling cold and shivery, pain or a burning feeling when weeing, or generally feeling unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection. 

Breathlessness, looking pale or coughing

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.

Less commonly, you may have a cough.

Rarely, you may have scarring or inflammation of the lungs, or a serious condition where the lungs can’t provide enough oxygen to the blood. Let your healthcare team know if you are very short of breath, have fast breathing, feel confused, or your skin or lips turn blue. It is also rare to get a type of anaemia called haemolytic anaemia.

Bruising, bleeding gums or nosebleeds

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).

Less commonly you might have bleeding from elsewhere in your body.

Loss of appetite

You might lose your appetite for various reasons while having cancer treatment. Sickness, taste changes or tiredness can put you off food and drinks.

Nerve changes

Numbness or tingling in fingers or toes is often temporary and can improve after you finish treatment. Tell your healthcare team if you're finding it difficult to walk or complete fiddly tasks such as doing up buttons.

Other nerve changes include burning, itching or pain.

Less commonly, you may have shaking or trembling, a sharp, severe shooting pain along a nerve, or increased or decreased sensitivity to touch, pain or temperatures.

Taste or smell changes

Taste changes may make you go off certain foods and drinks. You may also find that some foods taste different from usual or that you prefer to eat spicier foods. Your taste gradually returns to normal a few weeks after your treatment finishes.

Rarely, you may have changes to your smell, causing normal odours to smell unpleasant.

Headaches

Tell your healthcare team if you keep getting headaches. They can give you painkillers to help.

Eye changes

Eye changes may include watery eyes.

Watery eyes is also called excessive tearing or epiphora (pronounced ep-if-or-ah). Tell your doctor or nurse if this is a problem for you. They can prescribe medicines to help. Try to avoid dust, pollen or animal hairs as they can make the watering worse. 

Less commonly, you may have dry eyes or eye pain, or changes in your vision, including blurred or double vision or a loss of vision that may be permanent. Or you may have a loss of vision in half of your visual field. Your visual field is how wide of an area you can see when focusing on something,

Leg, foot or facial swelling

You may have swelling in your legs and feet due to a build up of fluid (oedema).

Rarely, you might have face swelling.

Blood pressure changes

Tell your doctor or nurse if you have headaches, nosebleeds, blurred or double vision or shortness of breath. These symptoms may be caused by high blood pressure.

Less commonly, your blood pressure might go very high. Or you may have low blood pressure causing you to feel dizzy, lightheaded or faint.

You will have your blood pressure checked regularly.

Blood clots

Blood clots can develop in the deep veins of your body, usually the leg. This is called deep vein thrombosis (DVT). A blood clot can be very serious if it travels to your lungs (pulmonary embolism), although this isn’t common.

Symptoms of a blood clot include:

•    pain, redness and swelling around the area where the clot is and may feel warm to touch
•    breathlessness
•    pain in your chest or upper back – dial 999 if you have chest pain
•    coughing up blood

Throat changes

You may have a sore throat or an unpleasant tingling or burning sensation in the throat.

Less commonly, you may have throat pain, a hoarse voice or loss of voice.

Difficulty pooing (constipation)

Constipation is easier to sort out if you treat it early. Drink plenty and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your healthcare team if you think you are constipated. They can give you a laxative if needed.

Indigestion

You may have pain or discomfort in the upper part of your tummy (abdomen). Let your doctor or pharmacist know. They can prescribe medicines to help.

Hair loss

You could lose all your hair. This includes your eyelashes, eyebrows, underarms, legs and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before. 

Nail changes

Nail changes include brown or black discolouration, nails separating from the nailbed or nail inflammation.

Arm, leg, back, joint or muscle pain

You might have aches or pain in your arms, legs, muscles or joints. Speak to your doctor or nurse about what painkillers you can take to help with this.

Less commonly, you may have muscle spasms or weakness.

High temperature

You might get a high temperature (fever) for a few hours after having this treatment. Tell your doctor or nurse if you have a fever.

Tiredness and weakness

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

Less commonly, you may feel drowsy.

Difficulty adjusting your body temperature

Your body may find it hard to adjust its temperature. You may be more sensitive to hot or cold environments.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also help.

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treat it once it has started.

Diarrhoea

Contact your advice line if you have diarrhoea. For example, in one day you have 2 or more loose bowel movements than usual. If you have a stoma , you might have more output than normal. Your doctor may give you anti diarrhoea medicine to take home with you after treatment.

Try to eat small meals and snacks regularly. It’s best to try to have a healthy balanced diet if you can. You don’t necessarily need to stop eating foods that contain fibre. But if your diet is normally very high in fibre, it might help to cut back on high fibre foods such as beans, nuts, seeds, dried fruit, bran and raw vegetables. 

Drink plenty to try and replace the fluid lost. Aim for 8 to 10 glasses per day.

Skin changes

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes. Your healthcare team can tell you what products you can use on your skin to help.

The skin on your hands and feet may become sore, red, or may peel. You may also have tingling, numbness, pain and dryness. This is called hand-foot syndrome or palmar plantar syndrome.

Moisturise your skin regularly. Your healthcare team will tell you what moisturiser to use.

Less commonly, you may have red raised bumps or spots, or raised, itchy bumps (hives).

Rarely, you may have a severe skin reaction that may start as tender red patches, which lead to peeling or blistering of the skin. You might also feel feverish, and your eyes may be more sensitive to light. This is serious and could be life threatening. Or your skin may turn darker or lighter in areas.

There isn’t enough information to say how often this may occur, but you may have a severe skin reaction with a flat, red rash. You may also have a temperature, swollen lymph nodes, swelling in your face and dry, cracked lips.

Fits (seizures)

Tell your doctor or nurse straight away if this happens.

Rarely, this drug may cause fits that last 5 minutes or longer. This is a serious condition, and you should get medical care immediately.

Muscle problems

You may have weakness or an inability to move your body on one side. Speak to your healthcare team if you notice this.

Less commonly, you may have problems with muscle control, which causes clumsy movements and poor balance.

Rarely, you might have twitching or jerking of muscles that you can’t control.

Speech problems

You may have difficulty speaking or understanding speech.

Tummy (abdominal) pain

Tell your doctor or nurse if you have this. They can check for the cause of the pain and give you medicine to help. 

Mouth sores and ulcers

Mouth sores and ulcers can be painful. It helps to keep your mouth and teeth clean, drink plenty of fluids and avoid acidic foods such as lemons. Chewing gum can help to keep your mouth moist. Tell your doctor or nurse if you have ulcers.

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• an allergic reaction that can cause a rash, shortness of breath, redness or swelling of the face and dizziness - some allergic reactions can be life threatening. Tell your nurse if you notice any of these symptoms
• low levels of minerals and salts in your blood, such as sodium, potassium, magnesium and calcium. This will most likely go back to normal when you finish treatment. You have regular blood tests during treatment to check this
• high blood sugar levels that can cause headaches, feeling thirsty and blurred vision. You may have tests to check your blood sugar levels. You may need to check your levels more often if you have diabetes
• difficulty falling or staying asleep
• anxiety - symptoms include a feeling of unease, worry or fear. Other symptoms may include a fast heartbeat, feeling dizzy or shaky or having a dry mouth
• ear problems that include ringing in your ears (tinnitus), difficulty hearing in one or both ears, or earache. Rarely, you may have increased sensitivity to sounds, making them appear very loud or uncomfortable
• changes to your heart, including an irregular heartbeat, the heart muscle not getting enough oxygen or a heart attack. Tell your doctor or nurse straight away if you have any chest pain
• sudden reddening and warmth of the neck, upper chest and face (flushing) or hot flushes
• hiccups
• stomach changes that include bleeding in the stomach – symptoms include vomiting bright red blood or black, tarry poos. Or you may have inflammation of the lining of the stomach (gastritis) – symptoms include bloating, tummy pain or discomfort or indigestion
• acid from the stomach leaking up into the food pipe (oesophagus) – symptoms include heartburn, stomach acid coming back into the mouth, or pain or difficulty swallowing
• an abnormal sensation in the mouth, including tingling, burning or numbness. Rarely, you may have a dry mouth
• liver changes, including inflammation of the liver causing yellowing of the skin or white of the eyes. You will have regular tests to check this
• excessive sweating or night sweats
• jaw pain or difficulty opening your mouth
• kidney changes, including blood or protein in your urine. Rarely, your kidneys may stop working or urine may build up in the kidney
• pain or burning when peeing, peeing more often than usual or leaking urine
• you might have chills. Let your doctor know if you have this. They may be able to prescribe medicines to help
• flu-like symptoms - you might have symptoms such as headaches, aching muscles, a high temperature or runny nose
• feeling confused - you or the people around you may notice you are confused. Tell your doctor or nurse if this happens
• a swollen or puffy face with acne and increased facial hair (Cushing syndrome). You may also have stretch marks
• feeling agitated
• memory loss and problems with your thinking and concentration
• having a low mood for weeks or months (depression). Speak to your GP or healthcare team if you feel like this
• being in a state where you appear awake but can’t respond normally
• dizziness
• feeling generally unwell
• weight changes
• a skin reaction to areas of previous radiotherapy
• passing wind (flatulence)
• low levels of fluid in the body (dehydration)

Rare side effects

These side effects happen in fewer than 1 in 100 people (less than 1%). You might have one or more of them. They include:

• sepsis - a serious reaction to an infection. Signs can include feeling very unwell, not passing urine, a very high or very low temperature, shivering, slurred speech or confusion, breathlessness, mottled or discoloured skin, extreme shivering or muscle pain. Call 999 or go to Accident and Emergency (A&E) immediately if you have any of these symptoms
• a urinary tract infection (UTI) – symptoms include pain or burning when peeing, needing to pee suddenly or urgently, or more often than usual during the day or night, cloudy or bloody pee, lower tummy or back pain, pain just under the ribs, a high temperature, or feeling hot and shivery, or a very low temperature below 36C
• a second cancer, such as a blood cancer
• a condition where your body stops making enough new red blood cells (aplastic anaemia)
• a non cancerous lump called a lipoma
• reactivation of previous infections with cytomegalovirus (CMV), hepatitis B or herpes simplex
• peeing large amounts and feeling thirsty often
• behaviour changes, including having mood swings, a lack of interest or motivation, or hearing, seeing, smelling, tasting or feeling things that appear real to you but not to others (hallucinations)
• a blocked nose
• poo (stool) leaking from your bottom (bowel incontinence)
• heavy bleeding from your vagina or no periods
• vaginal inflammation – symptoms may include changes in vaginal discharge, itching or pain
• breast pain
• problems getting or keeping an erection (impotence) or having a low sex drive
• your tongue changing colour
• teeth problems
• blood in your poo (stool) or piles (haemorrhoids). Let your healthcare team know if you have any bleeding
• a high level of fats in your blood. You may have tests to check this
• fainting
• a collapsed lung – symptoms included a sudden shortness of breath and chest pain. Chest pain could be worse when coughing or breathing
• coughing up blood
• asthma, which can cause breathing problems. Symptoms include wheezing, coughing, shortness of breath, and your chest feeling tight
• a blocked bowel – symptoms include feeling bloated and full, pain, feeling sick, vomiting large amounts or constipation
• a build up of fluid in the tummy – symptoms include your clothes feeling tighter, bloating, tummy pain or breathlessness

Other side effects

If you have side effects that aren’t listed on this page, you can look at the individual drug pages:

• capecitabine
• temozolomide

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do you need to know?

Other medicines, food and drink

Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Loss of fertility

It is not known whether this treatment affects fertility in women. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Men might not be able to get someone pregnant after treatment with this combination. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Men might be able to store sperm before starting treatment. And women might be able to store eggs or ovarian tissue. But these services are not available in every hospital, so you would need to ask your doctor about this.    

Pregnancy and contraception

This treatment may harm a baby developing in the womb. It is important not to become pregnant or get someone pregnant while you are having treatment. Women must not become pregnant for at least 6 months after the end of treatment. Men should not get someone pregnant for at least 3 months after treatment. 

Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you or your partner become pregnant while having treatment.

Breastfeeding

Don’t breastfeed during this treatment and for 2 weeks after your last dose, because the drug may come through into your breast milk.

Treatment for other conditions

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having.

Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, and yellow fever.

You can usually have:

• other vaccines, but they might not give you as much protection as usual
• the flu vaccine (as an injection)
• the coronavirus (COVID-19) vaccine

Talk to your doctor or pharmacist about the best time to have a vaccine in relation to your cancer treatment.

Contact with others who have had immunisations 

You can be in contact with other people who have had live vaccines as injections. If someone has had a live vaccine by mouth or nasal spray there may be a small risk the vaccine virus can be passed onto you if your immune system is weakened.

Your healthcare team will let you know if you need to take any precautions if you are in close contact with someone who has had a live vaccine.

More information

For further information about each drug and the possible side effects go to the electronic Medicines Compendium (eMC) website. You can find patient information leaflets for each drug on this website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.