GemCap

Before starting this treatment, you should have a blood test to check for gene changes that affect how your body produces DPD. DPD is an enzyme that helps the body break down capecitabine. 

If you have low DPD levels or no DPD (DPD deficiency), you have more risk of serious or life-threatening side effects from capecitabine. To reduce your risk, your doctor may give you:

• a lower dose of capecitabine to start with
• a different type of chemotherapy.

Having low DPD levels does not usually cause any symptoms. Without a test, you will not know whether your DPD levels are low. Testing finds most people who are affected, but not all. Your doctor, nurse or pharmacist can give you more information about your risk of DPD deficiency, before you start treatment.

We explain the most common side effects of this treatment here. We also include some that are less common.

You may get some of the side effects we mention, but you are unlikely to get all of them. And you may have some side effects, including rarer ones, that we have not listed here. 

Always tell your doctor, nurse or pharmacist about any side effects you have. They can give you: 

• drugs to help control some side effects
• advice about managing side effects. 

It is important to take any drugs exactly as explained. This means they will be more likely to work for you. 

Some cancer treatments can cause serious side effects. Sometimes, these may be life-threatening. Your doctor, nurse or pharmacist can explain the risk of these side effects to you.

If your body does not produce enough of an enzyme called DPD, you may have a higher risk of severe or life-threatening side effects.

Your doctor, nurse or pharmacist will give you 24-hour contact numbers for the hospital. If you feel unwell or need advice, you can call at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If your white blood cell count is low, you may be more likely to get an infection. A low white blood cell count is called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. If you have any of the following symptoms, contact the hospital straight away on the 24-hour number:

• a temperature above 37.5°C  
• a temperature below 36°C 
• you feel unwell, even with a normal temperature
• you have symptoms of an infection.

Symptoms of an infection include:

• feeling shivery and shaking
• a sore throat
• a cough 
• breathlessness
• diarrhoea
• needing to pass urine (pee) often, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

Your white blood cell count will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

• nosebleeds
• bleeding gums
• heavy periods
• blood in your urine (pee) or stools (poo)
• tiny red, brown or purple spots that may look like a rash – these spots can be harder to see if you have black or brown skin. 

If you have any unexplained bruising or bleeding, contact the hospital straight away on the 24-hour number. You may need a drip to give you extra platelets. This is called a platelet transfusion.

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may feel:

• very low in energy
• breathless 
• dizzy and light-headed. 

If you have these symptoms, contact the hospital straight away on the 24-hour number. You may need treatment for anaemia. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Capecitabine may cause diarrhoea. Sometimes it is severe. Diarrhoea means passing more stools (poo) than is normal for you, or having watery or loose stools. If you have a stoma, it will be more active than usual. Your doctor, nurse or pharmacist may give you anti-diarrhoea drugs to take at home.

If you have diarrhoea or an increase in stoma activity, follow their advice on:

• taking the anti-diarrhoea drugs 
• how much and what type of fluids to drink 
• any changes to your diet that might help. 

After this, contact the hospital on the 24-hour number straight away if:

• you have diarrhoea at night 
• you have uncomfortable stomach cramps
• you have diarrhoea 4 or more times in a day 
• you have a moderate increase in stoma activity
• the anti-diarrhoea drugs do not work within 24 hours.

They will tell you to stop taking capecitabine. When the diarrhoea is better, they will tell you whether you can start taking it again. Sometimes they reduce the dose.

Your doctor, nurse or pharmacist will prescribe anti-sickness drugs to help prevent or control sickness. Take the drugs exactly as they tell you to, even if you do not feel sick. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluid often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or if you are sick (vomit) 1 to 2 times in 24 hours, contact the hospital on the 24-hour number as soon as possible. They will give you advice. They may change your anti-sickness treatment. Let them know if you still feel sick.

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

Contact the hospital straight away on the 24-hour number, if:

• a sore mouth or throat affects how much you can drink or eat 
• your mouth, tongue, throat or lips have any blisters, ulcers or white patches. 

They can give you advice, and mouthwash or medicines to help with the pain or to treat any infection. Follow their advice and make sure you:

• drink plenty of fluids
• avoid alcohol and tobacco
• avoid food or drinks that irritate your mouth and throat.

This treatment can affect your appetite. Don’t worry if you do not eat much for 1 or 2 days. But if your appetite does not come back after a few days, or if you are losing weight, tell your doctor, nurse or pharmacist. They can give you advice. They may give you food or drink supplements. Or they may suggest changes to your diet or eating habits to help.

Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. You may also get a bitter or metallic taste in your mouth. Your doctor, nurse or pharmacist can give you advice. It might help to try:

• sucking sugar-free sour or boiled sweets
• eating cold foods
• eating sharp-tasting fresh fruit.

Taste changes usually get better after treatment ends. We have more information about coping with changes to taste.

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it ends. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can help you feel less tired. 

If you feel sleepy, do not drive or use machinery.

This treatment can affect how your kidneys or liver work. This is usually mild and goes back to normal after treatment ends. You will have blood tests to check how well your kidneys and liver are working. Contact the hospital on the 24-hour number if you:

• have blood in your urine (pee)
• are passing less urine or peeing less often than usual.

Drinking fluids also helps protect your kidneys. The advice is usually to try to drink at least 2 litres (3½ pints) of fluid each day. But follow any advice from your doctor, nurse or pharmacist about how much is right for you.

This treatment can cause a build-up of fluid in the body. This will slowly get better after treatment ends. Contact the hospital on the 24-hour number if you: 

• are gaining weight  
• have swelling in your legs or ankles. 

They can give you and advice and treatment to help.

Your hair will get thinner. Or you may lose all the hair from your head. You may also lose your eyelashes and eyebrows, as well as other body hair. Hair loss usually starts after your first or second treatment.

If you want to cover up hair loss, there are different ways you can do this. Your nurse will give you information about coping with hair loss. 

Remember to protect your skin from the sun. Use suncream with a sun protection factor (SPF) of at least 30 on your scalp. Or cover up with a hat or scarf.

Hair loss is almost always temporary. Your hair will usually grow back after treatment ends.

Chemotherapy can affect your skin. If your skin feels dry, try using soap-free cleansers and unperfumed moisturising cream every day.

This treatment can also:

• cause a rash, which may be itchy
• make your skin darker in some areas
• make any area treated with radiotherapy red or sore – if you have white skin the area will become red, and if you have black or brown skin the area might become darker
• make you more sensitive to the sun.

Your skin may burn more easily during treatment and for several months after. Use a sun cream of at least SPF 30. SPF stands for sun protection factor.  Cover up with clothing and wear a hat.

Always tell your doctor, nurse or pharmacist about any skin changes. They can give you advice or prescribe creams or medicines to help. Changes to your skin are usually temporary and improve when treatment ends.

Rarely, this treatment can cause a serious skin reaction that needs to be treated immediately in hospital.

Do not take any more of this treatment and contact the hospital straight away on the 24-hour number if you have any of these symptoms:

• a skin rash that is spreading
• blistering or peeling skin
• flu-like symptoms, such as a high temperature and joint pain
• sores on your lips or in your mouth.

This treatment can affect your nails. They may grow more slowly or break more easily. You might notice ridges or white or dark lines across your nails. These changes usually disappear as the nails grow out after treatment. Sometimes nails can become loose or fall out.

If the skin around your nails becomes sore and swollen, contact the hospital straight away on the 24-hour number. These might be signs of an infection.

Tips to look after your nails:

• Keep your nails clipped short and clean. 
• Avoid using very hot water when washing your hands or bathing.
• Moisturise your nails and cuticles regularly.
• It is okay to use water-based nail polish - but ask your cancer team if you want to use false nails, gels or other acrylics during treatment.
• Wear gloves to protect your nails when working in the house or garden.
• If your toenails are affected, wear well-fitting shoes, or shoes with open toes to cushion them.

Tell your doctor or nurse about any changes to your nails. They can give you advice or arrange for you to see a podiatrist. They are a foot care specialist.

This treatment can affect the palms of your hands and the soles of your feet. This is called palmar-plantar or hand-foot syndrome. 

If you have white skin these areas may become red. If you have black or brown skin, these areas might get darker. 

The skin on the palms of your hands and the soles of your feet may:

• be sore
• be painful, tingle, or swell
• peel, crack or blister. 

If you have any of these symptoms, contact the hospital straight away on the 24-hour number. They can give you advice. This is especially important if you have any broken skin or if walking is difficult. They can prescribe creams and painkillers to help.

You can care for your hands and feet by: 

• keeping your hands and feet cool by washing in cool water
• gently moisturising your hands and feet regularly
• wearing gloves to protect your hands and nails when working in the house or garden
• wearing loose cotton socks and avoiding tight-fitting shoes and gloves.

This treatment may cause headaches. If you have headaches, tell your doctor, nurse or pharmacist. They can give you advice about painkillers that may help. Tell them if the headache does not get better, or gets worse.

Your eyes may become watery and feel sore. Your doctor, nurse or pharmacist can give you advice and eye drops to help with this.

Contact the hospital on the 24-hour number if:

• your eyes get red and inflamed (conjunctivitis)
• you have pain in your eyes
• you notice any change in your vision. 

Cancer and some cancer treatments can increase the risk of a blood clot. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• throbbing pain or swelling in a leg or arm
• reddening of the skin in the area – if you have black or brown skin, this can be harder to notice, but the skin might become darker
• suddenly feeling breathless or coughing.

Always call 999 if you have:

• chest pain
• difficulty breathing.

A blood clot is serious, but it can be treated with drugs called anticoagulants. These thin the blood. Your doctor, nurse or pharmacist can give you more information about preventing and treating blood clots.

Capecitabine contains lactose. If you have a lactose allergy or intolerance, ask your doctor, nurse or pharmacist for more information.

Some medicines can affect how this treatment works or be harmful while you are having it. Always tell your cancer doctor, nurse or pharmacist about any drugs you are taking or planning to take, such as: 

• medicines you have been prescribed
• medicines you buy in a shop, pharmacy or online
• vitamins or supplements 
• herbal drugs and complementary or homeopathic therapies
• recreational drugs – for example, cannabis.

Doctors usually recommend that people with cancer have vaccinations for flu and for coronavirus (covid). These help reduce your risk of serious illness from these infections. Most people can have these vaccines, including people with weak immune systems.

If your immune system is weak, you should not have live vaccinations. Live vaccines can make you unwell because they contain a very weak version of the illness they will protect you against. Live vaccines include Zostavax^®, which is a shingles vaccine, and the yellow fever vaccine.

It is important to ask your doctor, nurse or pharmacist for advice about having vaccinations. They can explain what vaccines are right for you and when it is best to have them.

Your doctor, nurse or pharmacist will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm a developing baby. It is important to use contraception to prevent pregnancy. Follow their advice about:

• what types of contraception to use 
• how long after treatment you should continue to use contraception. 

It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex during this treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.

You are advised not to breastfeed while having this treatment, or for some time after treatment ends. This is because the drugs could be passed to the baby through breast milk. 

Your doctor, nurse or pharmacist can give you more information.

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

If you have periods, these may become irregular or stop while you are having this treatment. They might return after treatment, but this does not always happen. Your menopause may start sooner than it would have done. Your doctor, nurse or pharmacist can give you more information.

If you need medical treatment for any reason other than cancer, always tell the healthcare professional that you are having cancer treatment. Give them the contact details for your cancer doctor or cancer team so they can ask for advice.

If you have appointments with a dentist, always tell them you are having cancer treatment. Talk to your cancer team before you have any dental treatment.