ECX

Before starting this treatment, you should have a blood test to check whether you have low levels of an enzyme called DPD. This is called DPD deficiency. People who have low DPD levels can develop serious or life-threatening side effects if they have capecitabine. If you have DPD deficiency, this can affect the treatments that are available for you.

You will not know without a test if you have DPD deficiency, as there are no symptoms. Testing can detect most cases of DPD deficiency, but not all cases. You can talk to your cancer doctor about your risk of having DPD deficiency before you start treatment.

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

You may get some of the side effects we mention, but you are unlikely to get all of them. You may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.

Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.

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

If you have low levels of an enzyme called DPD (DPD deficiency), you may have a higher risk of severe or life-threatening side effects.

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

We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is sometimes 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. Contact the hospital straight away on the 24-hour contact number you have been given if:

• your temperature goes over 37.5°C (99.5°F)
• you suddenly feel unwell, even with a normal temperature
• you have symptoms of an infection
• your temperature goes below 36°C (96.8°F).

Symptoms of an infection include:

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

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

The number of white blood cells 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 or purple spots on the skin that may look like a rash.

Tell your doctor if you have any unexplained bruising or bleeding. 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 have symptoms such as:

• pale skin
• lack of energy
• feeling breathless
• feeling dizzy and light-headed.

Tell your doctor or nurse if you have these symptoms.

If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Your doctor will give you anti-sickness drugs to help prevent or control sickness during your treatment. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit) more than once in 24 hours, contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may change the anti-sickness drug to one that works better for you.

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 has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy.

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

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.

If your mouth or throat is sore:

• tell your nurse or doctor – they can give you a mouthwash or medicines to help
• try to drink plenty of fluids
• avoid alcohol, tobacco, and foods that irritate your mouth and throat.

Sucking ice chips may sometimes help relieve mouth or throat pain. But if you are having radiotherapy to the head or neck, do not suck on ice. It can cause damage.

Capecitabine may cause severe diarrhoea. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.

Your hospital team may give you anti-diarrhoea drugs to take at home.

If you have diarrhoea or an increase in stoma activity:

• follow any advice from your hospital team about taking anti-diarrhoea drugs
• drink at least 2 litres (3½ pints) of fluids each day
• avoid alcohol, caffeine, milk products, high-fat foods and high-fibre foods.

Contact the hospital straight away if:

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

Your doctor may ask you to stop taking capecitabine. When the diarrhoea is better, they will tell you if you can start taking it again. Sometimes they reduce the dose.

You may get pain or discomfort in your abdomen (tummy), feel bloated or have indigestion or wind. Your doctor can give you drugs to help improve these symptoms. If the pain does not improve or if it gets worse, tell your doctor or nurse.

Your urine may be a pink-red colour for up to 48 hours after you have your treatment. This is caused by epirubicin and is not harmful.

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.

Your nurse can talk to you about ways to cope with hair loss. There are ways to cover up hair loss if you want to. Your scalp may be sensitive. It is important to cover your head to protect your skin when you are out in the sun.

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

This treatment may affect your skin. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day. This treatment can also cause a rash, which may be itchy. 

Always tell your doctor or nurse about any skin changes. They can give you advice and may give you creams or medicines to help. Any changes to your skin are usually temporary and improve when treatment finishes.

Very rarely, capecitabine may cause a more serious skin condition. You may have a skin rash which then blisters, and your skin can peel. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, you should stop taking the capecitabine tablets until you have spoken to your doctor. Call your doctor or the 24-hour number the hospital has given you. If you cannot get through, call the NHS urgent advice number which is 111.

You may get sore and red palms of hands and soles of feet. The skin may also begin to peel. This is called palmar-plantar or hand-foot syndrome. It usually gets better after treatment ends.

Tell your doctor or nurse about any changes to your hands or feet. They can give you advice and prescribe creams to improve any symptoms you have. It can help to:

• keep your hands and feet cool
• moisturise your hands and feet regularly
• avoid tight-fitting socks, shoes and gloves.

This treatment may affect the nerves, which can cause numb, tingling or painful hands or feet. You may find it hard to fasten buttons or do other fiddly tasks.

Tell your doctor if you have these symptoms. They sometimes need to lower the dose of the drug. The symptoms usually improve slowly after treatment finishes. But for some people they may never go away. Talk to your doctor if you are worried about this.

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. Sometimes nails can become loose or fall out. When treatment finishes, any changes usually disappear as the nails grow out.

There are things you can do to look after your nails:

• Moisturise your nails and cuticles regularly.
• Keep your nails clipped short.
• Wear gloves to protect your nails when you are doing things in the house or garden.
• Keep your hands and nails clean to help avoid infection, but avoid bathing in very hot water.
• Do not use false nails, gels or other acrylics during this treatment, as they may increase the risk of infection.
• It is fine to wear nail varnish, but try to use a water-based polish. Avoid using harsh chemicals, such as acetone, when taking off the polish.
• If your toenails are affected, wear well-fitted shoes to cushion them.

Tell your doctor or nurse if you notice changes to your nails. They can give you advice or arrange for you to see a podiatrist for foot care advice if needed.

This treatment may cause hearing changes, including hearing loss. You may have ringing in the ears. This is called tinnitus. You may also become unable to hear some high-pitched sounds. Hearing changes usually get better after this treatment ends. But some can be permanent. Tell your doctor if you notice any changes in your hearing.

This treatment may make your eyes feel sore, look red and feel itchy. This is called conjunctivitis. Your doctor can prescribe eye drops to help treat this. Your pharmacist will tell you how to use your eye drops. It is important to follow their advice.

It may also make your eyes more sensitive to light and cause blurry vision. If you have pain or notice any change in your vision, always tell your doctor or nurse.

Cisplatin can affect how your kidneys work. You will have blood tests before and during treatment to check how well your kidneys are working.

Before and after each treatment, your nurses will give you extra fluids through a drip. This is to protect your kidneys. It is also important to drink at least 2 litres (3½ pints) of non-alcoholic fluid each day during treatment.

Tell your nurse or doctor if:

• you are not able to drink as much as you have been asked to – for example, if you feel sick
• you are being sick or have diarrhoea
• you are passing urine (peeing) less than usual.

This treatment may affect how your liver works. This is usually mild. You will have blood tests to check how well your liver is working.

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

• throbbing pain, redness or swelling in a leg or arm
• suddenly feeling breathless or coughing
• sharp chest pain, which may be worse when you cough or take a deep breath.

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.

You can help reduce the risk of developing a blood clot by:

• staying active during treatment
• drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Capecitabine contains a small amount of lactose. If you have a lactose intolerance, talk to your doctor before you start taking this.

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 sex during a course of this treatment, you should use barrier protection such as a condom or dental dam. This will protect your partner if any of the drug is in your semen or vaginal fluid.

Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment. The drugs may harm a developing baby. It is important to use contraception during your treatment and for a while after treatment finishes. Your doctor, nurse or pharmacist can tell you more about this.

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

Your doctor or nurse can give you more information.

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

• medicines you have been prescribed
• medicines you buy in a shop or chemist
• vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.

Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus (covid) vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations. 

If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.