Mitomycin and fluorouracil (5FU) with radiotherapy

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 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 rarer side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.

Radiotherapy also causes side effects. We have more information about the possible side effects of radiotherapy and how to manage them.

Your doctor, nurse or pharmacist can give you drugs to help control some side effects. It is important to take them exactly as they tell you. This means the drugs will be more likely to work for you. Your doctor, nurse or pharmacist 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 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.

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.

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.

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 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.

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.

Your hair may get thinner. But you are unlikely to lose all the hair from your head. Hair loss usually starts after your first or second treatment. It is almost always temporary, and your hair will usually grow back after treatment ends. 

Your nurse can talk to you about ways to cope with hair loss.

Chemotherapy may affect your skin and nails. Your doctor or nurse can tell you what to expect.

If your skin feels dry, try using an unperfumed moisturising cream every day. You may get 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, and cover up with clothing and a hat. Your skin may darken. It will return to its normal colour after you finish treatment.

Radiotherapy can cause a skin reaction in the area being treated. This may be worse when you are having chemoradiation.

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

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:

• use lukewarm water to wash your hands and pat them dry
• keep your hands and feet cool
• moisturise your hands and feet regularly
• avoid tight-fitting socks, shoes and gloves
• avoid things which raise body heat, such as hot baths and heat pads
• avoid activities which may cause friction or pressure, such as clapping, typing and gripping a tool tightly.

This treatment may make your eyes feel sore, red and itchy. This is called conjunctivitis. Your doctor will prescribe eye drops to help prevent this. It is important to use the eye drops as your doctor tells you.

This treatment may also make your eyes more sensitive to light and cause blurry vision. Always tell your doctor or nurse if you have eye pain or notice any change in your vision.

5FU can affect how the heart works. You may have tests to check how well your heart is working. These may be done before, during and after treatment. 

You may develop heart problems even if these test results are normal. Very rarely, 5FU causes heart failure or a heart attack. The risk of this happening is very low. It happens to less than 1 in 100 (1%) of people who have 5FU. But it is important that you know about it. 

Contact the hospital straight away on the 24-hour number if you have any of these symptoms during or after treatment:

• breathlessness
• dizziness
• changes to your heartbeat (palpitations)
• swollen feet and ankles.

Always call 999 if you have:

• chest pain, pressure, heaviness, tightness or squeezing across the chest
• difficulty breathing.

This treatment can cause changes to the lungs. Tell your doctor, nurse or pharmacist if you develop: 

• a cough that does not go away
• wheezing
• breathlessness.

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

5FU can cause sudden tightness (spasm) in the muscles in your chest for a short time. Contact the hospital straight away on the 24-hour number if you have any of these symptoms during treatment:

• breathlessness
• a cough that does not go away
• wheezing.

Always call 999 if you have difficulty breathing.

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.

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.

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.

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.