Mitomycin and fluorouracil (5FU) with radiotherapy

Mitomycin and fluorouracil (5FU) is a combination treatment used with radiotherapy to treat anal cancer and muscle-invasive bladder cancer. It may also be used to treat other cancers.

It is best to read this information with our general information about chemotherapy and the type of cancer you have.

Mitomycin and 5FU is given into a vein. You usually have it as an outpatient or during a hospital stay. Your cancer doctor, nurse or pharmacist will tell you how often you will have it.

Mitomycin and 5FU can cause side effects. Some of the side effects can be serious, so it is important to read the detailed information below.

Your healthcare team can give you advice on how to manage any side effects. Tell your doctor or nurse straight away if you:

  • have a temperature
  • feel unwell
  • have severe side effects, including any we do not mention here.

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

If you need medical attention for any reason other than cancer, always tell the healthcare staff that you are having this treatment.

What is Mitomycin and fluorouracil (5FU)?

This information is about a chemotherapy treatment called mitomycin and fluorouracil (5FU), when it is given with radiotherapy. When chemotherapy and radiotherapy are given together, it is called chemoradiation.

Mitomycin and fluorouracil (5FU) with radiotherapy is used to treat anal cancer and muscle-invasive bladder cancer. It may also be used to treat other cancers such as vulva cancer.

Sometimes mitomycin and fluorouracil (5FU) are given without radiotherapy.

It is best to read this information with our general information about chemotherapy and the type of cancer you have.

Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.


The drugs used

There are two drugs in this treatment:

  • mitomycin (Mitomycin C Kyowa®
  • fluorouracil (5FU). 

In this information, we call fluorouracil by its more common name, 5FU.


How chemotherapy is given

You will be given mitomycin and 5FU in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you. 

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.

Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that your blood cells are at a safe level to have chemotherapy. 

You will see a doctor or nurse before you have chemotherapy. They will ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.

Chemotherapy

This video provides a brief overview of chemotherapy treatment, how it can be given, how it works and possible side effects.

About our cancer information videos

Chemotherapy

This video provides a brief overview of chemotherapy treatment, how it can be given, how it works and possible side effects.

About our cancer information videos


How mitomycin and 5FU are given with radiotherapy

You start the chemotherapy and radiotherapy on the same day. Radiotherapy is then given once a day, Monday to Friday, for 4 to 7 weeks. The number of weeks depends on the type of cancer you have. You will have chemotherapy during the first week of your treatment, and again in week 4 or 5.

On the first day of treatment

Your nurse usually gives you anti-sickness (anti-emetic) drugs before the chemotherapy. The chemotherapy drugs can be given through:

  • a short thin tube the nurse puts into a vein in your arm or hand (cannula)
  • a fine tube that goes under the skin of your chest and into a vein close by (central line)
  • a fine tube that is put into a vein in your arm and goes up into a vein in your chest (PICC line).

Side effects while mitomycin is being given

Your nurse gives you mitomycin as an injection directly into your cannula or line, with a drip (infusion) to flush it through. Some people might have side effects while they are being given mitomycin or shortly after they have it.

Allergic reaction

Some people have an allergic reaction while having this treatment. Signs of a reaction can include:

  • feeling hot or flushed
  • a skin rash
  • itching
  • shivering
  • feeling dizzy
  • a headache
  • feeling breathless
  • swelling of your face or mouth
  • pain in your back, tummy or chest.

Your nurse will check you for signs of a reaction during your treatment. If you feel unwell or have any of these signs, tell them straight away. If you do have a reaction, it can be treated quickly.

Sometimes a reaction can happen a few hours after treatment. If you get any signs or feel unwell after you get home, contact the hospital straight away.

The drug leaks outside the vein

If this happens it can damage the tissue around the vein. This is called extravasation. Extravasation is not common but if it happens it is important that it’s dealt with quickly. Tell your nurse straight away if you have any stinging, pain, redness or swelling around the vein.

If you get any of these symptoms after you get home, contact the doctor or nurse straight away on the number they gave you.

Having 5FU

After the mitomycin, you have 5FU. This is usually given through a small pump, which the nurse connects to your central or PICC line. You wear the pump on your belt or carry it in a bag. It gives the drug slowly over 4 to 5 days.

Your chemotherapy nurse will explain how to look after the pump. They will also explain what to do if there is a problem.

If you have a cannula, you stay in hospital while you have 5FU through a drip over 4 to 5 days.

Having radiotherapy

After the 5FU is started, you go to the radiotherapy department to have your first radiotherapy treatment. Often you can have radiotherapy in the same hospital and on the same day as you have chemotherapy. But you may need to have chemotherapy at one hospital, then go to a different hospital the next day to have radiotherapy.

Going home

Most people have 5FU through a pump and can go home after the first radiotherapy treatment. But if you have a cannula, you will stay in hospital until the 5FU is finished. You will still have radiotherapy each day while you are in hospital.

Before you go home, the nurse or pharmacist will give you anti-sickness (anti-emetic) drugs to take. They may also give you anti-diarrhoea or other tablets to help with other side effects. Take all your tablets exactly as they have explained to you.

The next days and weeks

You come back to the hospital for radiotherapy each weekday, for 4 to 7 weeks. The number of weeks depends on the type of cancer you have. When the 5FU pump is empty, you go to the chemotherapy day unit and the nurse will disconnect it, or a district nurse will disconnect the pump for you at home.

Week 4 or 5 of treatment

In week 4 or 5 of radiotherapy, the nurse will connect a 5FU pump to your line again for 4 to 5 days. You have this done at the chemotherapy day unit. Again, when the 5FU pump is empty, you go to the chemotherapy day unit and the nurse will disconnect it, or a district nurse will disconnect the pump for you at home.

PICC lines and central lines playlist

Watch our short animated videos about having PICC lines and central lines put in.

PICC lines and central lines playlist

Watch our short animated videos about having PICC lines and central lines put in.


About side effects

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.

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

You may also have some side effects that we haven’t 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.

Serious and life-threatening side effects

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

Rarely, fluorouracil can cause severe side effects in people who have low levels of an enzyme called DPD. This is called having a DPD deficiency. You will not know before you start treatment whether you have a DPD deficiency as there are no symptoms. There is a test available but it only tests for the more common types of DPD deficiency. This means that the test will detect most cases of DPD deficiency but not all cases. The test is not widely available on the NHS. Talk to your doctor if you are worried about having a DPD deficiency.

Contact the hospital

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.

More information

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) to download a Patient Information Leaflet (PIL) for these drugs. The leaflet lists all known side effects.


Common side effects

Risk of infection

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 called neutropenia.

If you have an infection, it is important to treat it as soon as possible. Contact the hospital straight away on the 24-hour contact number you have 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.

Symptoms of an infection include:

  • feeling shivery
  • a sore throat
  • a cough
  • diarrhoea
  • needing to pass urine often.

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.

Bruising and bleeding

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any bruising or bleeding that you cannot explain. This includes:

  • nosebleeds
  • bleeding gums
  • tiny red or purple spots on the skin that may look like a rash.

Some people may need a drip to give them extra platelets. This is called a platelet transfusion.

Anaemia (low number of red blood cells)

This treatment can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If the number of red blood cells is low, you may be tired and breathless. Tell your doctor or nurse if you feel like this. If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Diarrhoea

This treatment may cause severe diarrhoea. Your nurse or doctor may give you anti-diarrhoea drugs to take at home.

If you have diarrhoea:

  • follow any advice you have been given 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 6 times in a day
  • the anti-diarrhoea drugs do not work within 24 hours.

Some people may need to go to hospital to have fluids through a drip. You may need to take antibiotics.

Feeling sick

You may feel sick in the first few days after this treatment. Your doctor will give you anti-sickness drugs to help prevent or control sickness. 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 and eat small amounts often. If you continue to feel sick, or if you vomit more than once in 24 hours, contact the hospital as soon as possible. They will give you advice and may change the anti-sickness drug to one that works better for you.

Sore mouth

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

If your mouth 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.

Hair loss

Your hair may get thinner but you are unlikely to lose all the hair from your head. Hair loss usually starts about 3 to 4 weeks after starting chemotherapy. 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.

Skin changes

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. During treatment and for several months afterwards, you'll 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. The skin may redden or get darker. It may also become dry, flaky and itchy. Towards the end of treatment, the skin sometimes becomes moist and sore. There may be breaks in the skin, especially around the anus and groin.

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.

Soreness and redness of palms of hands and soles of feet

This is called palmar-plantar or hand-foot syndrome. Your doctor or nurse can give you advice and prescribe creams to improve the symptoms. It can help to keep your hands and feet cool and to avoid tight-fitting socks, shoes and gloves. It will start to get better when treatment ends.

Effects on the lungs

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

  • a cough
  • wheezing
  • a fever (high temperature)
  • breathlessness.

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

Effects on the kidneys

This treatment can affect how your kidneys work. This is usually mild and goes back to normal after treatment.

Sometimes mitomycin can cause a kidney problem called haemolytic-uraemic syndrome (HUS). This is very rare but it can be serious. Tell your doctor if you feel tired and breathless, or if you have any bruising or bleeding you cannot explain.

You will have blood tests during treatment to check how well your kidneys are working. If your doctor thinks you have HUS, they will start you on treatment straight away.

It is important to drink at least two litres (three and a half pints) of fluids a day to help protect your kidneys.

Effects on the heart

This treatment can affect the way the heart works. You may have tests to see how well your heart is working. These may be done before, during, and sometimes after treatment. If the treatment is causing heart problems, your doctor can change the type of treatment you are having.

Contact a doctor straight away if you:

  • have pain or tightness in your chest
  • feel breathless or dizzy
  • feel your heart is beating too fast or too slowly.

Other conditions can cause these symptoms, but it is important to get them checked by a doctor.

A photo of Stuart talking about neutropenic sepsis

Neutropenic sepsis

Stuart talks about he how coped with neutropenic sepsis, an infection which can be a side effect of chemotherapy.

About our cancer information videos

Neutropenic sepsis

Stuart talks about he how coped with neutropenic sepsis, an infection which can be a side effect of chemotherapy.

About our cancer information videos

Watch our hair loss video playlist

In these videos, people with experience of cancer and hair loss share their stories. You can also watch tutorials on wigs, headwear and eye make up.

Watch our hair loss video playlist

In these videos, people with experience of cancer and hair loss share their stories. You can also watch tutorials on wigs, headwear and eye make up.


Less common side effects of mitomycin and 5FU with radiotherapy

Effects on the nervous system

Rarely, 5FU can affect the nervous system. Tell your doctor or nurse straight away if you: 

  • feel dizzy or unsteady
  • feel anxious or restless
  • have problems sleeping 
  • have mood changes
  • feel drowsy or confused. 

It is important not to drive or operate machinery if you notice these side effects.

Eye problems

This treatment may make your eyes feel sore, red and itchy (conjunctivitis). Your doctor will prescribe eye drops to help prevent 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.


Other information about mitomycin and 5FU

Blood clot risk

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

  • pain, redness or swelling in a leg or arm
  • breathlessness
  • chest pain. 

If you have any of these symptoms, contact a doctor straight away. 

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

Other medicines

Some medicines can affect chemotherapy or be harmful when you are having it. This includes medicines you can buy in a shop or chemist. Tell your cancer doctor about any drugs you are taking, including vitamins, herbal drugs and complementary therapies.

Vaccines

You should not have some types of vaccinations during, and for a time after, this treatment. Talk to your cancer doctor before having any vaccinations.

Fertility

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

Contraception

Your doctor will advise you not to get pregnant or father a child while having this treatment. The drugs may harm the developing baby. It is important to use effective contraception.

Sex

If you have sex during this course of chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.

Women may be advised to wait a few weeks until after radiotherapy before having sex. This is to allow any inflammation and side effects to settle. Ask your doctor or nurse for advice on this, as it can vary.

Breastfeeding

Women are advised not to breastfeed while having this treatment and for some time afterwards. This is because the drugs could be passed to the baby through breast milk.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses that 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.