ECF

Before starting this treatment, you should have a blood test. This test checks for gene changes that affect how your body produces DPD. DPD is an enzyme that helps the body break down 5FU. 

If you have low DPD levels or no DPD (DPD deficiency), you have more risk of serious or life-threatening side effects from 5FU. To reduce your risk, your doctor may give you:

• a lower dose of 5FU 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.

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 may cause severe diarrhoea. 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 a mild increase in stoma activity, follow their advice about: 

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

Contact the hospital straight away on the 24-hour number 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.

You may need to give a stool sample, or go to hospital to have fluids through a drip or antibiotics.

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.

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.

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.

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 affect the nerves in your fingers and toes. This can cause numbness, tingling or pain in your hands or feet. This is called peripheral neuropathy. You might find it hard to do fiddly tasks such as fastening buttons or tying shoelaces.

If you have these symptoms, always tell your doctor, nurse or pharmacist. They sometimes need to change the drug or the dose of the drug. The symptoms usually improve slowly after treatment ends. But for some people they continue and are a long-term side effect of treatment.

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.  

During treatment and for several months afterwards, you will be more sensitive to the sun and your skin may burn more easily than usual. You can still go out in the sun, but:

• use a suncream with a sun protection factor (SPF) of at least 30
• cover up with clothing
• wear a hat.

Always tell your doctor or nurse about any changes to the skin. They can give you advice and may give you creams or medicines to help. The skin usually returns to normal after treatment finishes.

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 may make your eyes feel sore, red and itchy (conjunctivitis). Your doctor, nurse or pharmacist can prescribe eye drops to help. It is important to use these as instructed.

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 may get better after this treatment ends. But this does not always happen. If you notice any changes in your hearing, tell your doctor, nurse or pharmacist.

Cisplatin can affect how the 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 nurse will give you extra fluids through a drip. This is to protect your kidneys. 

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.

Contact the hospital on the 24-hour number if you are: 

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

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.

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

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. 

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 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.