Your doctor will talk to you about this treatment and its possible side effects before you agree (consent) to have treatment.
The drugs used in FOLFOX
FOLFOX is named after the initials of the drugs used for treatment. The drugs are:
FOL – folinic acid (also called leucovorin or calcium folinate)
F – fluorouracil (5FU)
OX – oxaliplatin.
In this information, we call fluorouracil by its more common name, 5FU.
Folinic acid is not a chemotherapy drug, but is often given with 5FU to make it work better.
You will be given FOLFOX 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.
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).
Your nurse gives you folinic acid and oxaliplatin as a drip (infusion) over two hours. They are usually given through a pump which runs over a set time.
Your nurse will give some 5FU as an injection into your line. Then the rest of the 5FU is usually given through a small pump that you carry on a belt or in a holder. You will be able to go home once the pump is connected to your line and the infusion has started.
You may come back to the hospital to have the pump disconnected. Sometimes a district nurse will do this for you at home. Your chemotherapy nurse will explain how to look after the pump. They can also tell you what to do if there is a problem.
If you have a cannula, you will need to stay in hospital to have the 5FU.
Your course of chemotherapy
You usually have a course of several cycles of treatment over a few months. FOLFOX is given every 14 days.
On the first day of your treatment you have:
- oxaliplatin and folinic acid as a drip (infusion) over two hours.
- 5FU as injection into your line or cannula.
- 5FU through an infusion pump over 46 hours or over 24 hours. If you have it over 24 hours you come back to hospital the next day for another injection of 5FU and start another infusion pump for 24 hours.
After your infusion pump of 5FU is complete you have a rest period of 12 days with no treatment. This completes your first cycle of FOLFOX. You then start your second cycle of FOLFOX. Your nurse or doctor will discuss your treatment plan with you. They may give you a copy of the treatment plan to take home with you.
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 also 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.
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, 5FU 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 it will detect most cases of DPD deficiency, but not all of them. 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.
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.
Some people have an allergic reaction while having this treatment. Signs of a reaction can include:
- feeling hot or flushed
- a skin rash
- 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.
Rarely, oxaliplatin can affect the area around the voicebox (larynx). This can cause difficulties with swallowing and breathing. This might happen during treatment or in the first few days after treatment. This side effect can be very frightening, but it should only be temporary. If you have breathing difficulties, take long, deep breaths through your nose. This will have a calming effect and help your breathing return to normal.
This symptom may be worse in cold temperatures, so it is advisable to avoid cold drinks and ice cubes during treatment and for a few days afterwards. It might also help to wrap up warm and cover your nose and mouth in cold weather.
It is important to let your doctor know if you have this side effect. Your doctor may increase the time of your infusion to 4 to 6 hours in future cycles, which will reduce the chance of it happening again.
Pain along the vein
This treatment can cause pain at the place where the injection is given. It can also cause pain along the vein. If you feel any pain, tell your nurse or doctor straight away. They will check the site. They may give the drug more slowly or flush it through with more fluid to reduce pain.
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
- 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:
- 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.
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.
Numb or tingling hands or feet (peripheral neuropathy)
This treatment affects 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.
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.
Loss of appetite
This treatment can affect your appetite. Do not worry if you do not eat much for a day or two. But if your appetite does not come back after a few days, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.
Feeling tired is a common side effect. 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 operate machinery.
This treatment 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 a mild increase in stoma activity:
- follow any advice from your cancer 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.
You may need to go to hospital to have fluids through a drip.
This treatment may cause headaches. If this happens, tell your doctor or nurse. They can give you painkillers.
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.
Soreness and redness of palms of hands and soles of feet
This is called palmar-plantar or hand-foot syndrome. It gets better when treatment ends. 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.
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 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.
Effects on the lungs
This treatment can cause changes to the lungs. Tell your doctor if you develop:
- a cough
- a fever (high temperature)
You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.
Effects on the heart
Chemotherapy 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 chemotherapy 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.
This treatment may make your eyes feel sore, red and itchy (conjunctivitis). Your doctor will prescribe eye drops to help prevent this. It is important to use these as you are told to.
This treatment 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.
Oxaliplatin may cause you discomfort when you pee (pass urine). You may also pass urine more often than usual. Make sure you drink plenty of fluids during the 24 hours following chemotherapy. Try to drink at least 2 litres (3½ pints).
It is also important to empty your bladder regularly and to try to pass urine as soon as you feel the need to go.
Contact the hospital straight away if you:
- feel any discomfort or stinging when you pass urine
- see any blood in it.
This treatment may cause hearing changes, including hearing loss. Some people may have pain or ringing in their ears (tinnitus) and become unable to hear some high-pitched sounds. Tinnitus usually gets better after treatment ends. Some hearing changes can be permanent. Tell your doctor if you notice any changes in your hearing.
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
- 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.
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.
Your doctor or nurse may talk to you about vaccinations. These help reduce your risk of getting infections.
Doctors usually recommend that you have a flu jab, which is an inactivated vaccination. People with weak immune systems can have this type of vaccination.
If your immune system is weak, you need to avoid live vaccinations such as shingles. Your cancer doctor or GP can tell you more about live vaccinations.
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.
Women are advised not to breastfeed while having this treatment. This is because the drugs could be passed to the baby through breast milk.
If you have sex in the first few days after chemotherapy, you need to use a condom. This is to protect your partner in case there is any chemotherapy in semen or vaginal fluids.
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.