FOLFIRINOX

FOLFIRINOX is the name of a combination of chemotherapy drugs. It includes the drugs below. How to pronounce the drug names are in brackets. 

• FOL – folinic acid also called leucovorin, calcium folinate or FA (foh-lin-ik-ass-id)
• F – fluorouracil also called 5FU (floor-oh-yoor-uh-sil
• Irin – irinotecan (i-rin-o-te-can)
• Ox – oxaliplatin (ox-ali-pla-tin)

It is a treatment for advanced pancreatic cancer.

How does FOLFIRINOX work?

These cancer drugs destroy quickly dividing cells, such as cancer cells.

How do you have FOLFIRINOX?

You have all drugs as a drip into your bloodstream (intravenously).

You might have treatment through a long plastic tube that goes into a large vein in your chest. The tube stays in place throughout the course of treatment. This can be a:

• central line
• PICC line
• portacath

Pumps

You might be able to have the infusion of 5FU at home through a small pump (if you have a central line ). You can keep the pump in a small bag, or a bag on a belt (like a bum bag). You’ll need to go back to the hospital after the second day of treatment, to have the pump disconnected. Or sometimes a chemotherapy nurse may be able to do this at your home.

How often do you have FOLFIRINOX?

You usually have FOLFIRINOX chemotherapy as cycles of treatment . This means you have the drugs and then a rest to allow your body to recover.

Each cycle of treatment lasts 2 weeks. Depending on your needs, you may have up to 12 cycles, taking 6 months in total.

You have each cycle of treatment in the following way:

Tests

You have blood tests before and during your treatment. They check your levels of blood cells and other substances in the blood. They also check how well your liver and kidneys are working.

DPD deficiency 

Before starting treatment with fluorouracil (5FU) you have a blood test to check levels of an enzyme called dihydropyrimidine dehydrogenase (DPD). A low DPD level means you are more likely to have severe side effects from this chemotherapy, so you may start treatment with a lower amount (dose) of the drug or have a different treatment. Your doctor, nurse or pharmacist will talk to you about this.

What are the side effects of FOLFIRINOX?

Side effects can vary from person to person. They also depend on what other treatments you're having. 

When to contact your team

Your doctor, nurse or pharmacist will go through the possible side effects. They will monitor you during treatment and check how you are at your appointments. Contact your advice line as soon as possible if:

• you have severe side effects 

• your side effects aren’t getting any better

• your side effects are getting worse

Early treatment can help manage side effects better. 

We haven't listed all the side effects here. Talk to your healthcare team if you have any new symptoms that you think might be a side effect of your treatment.

Remember it is very unlikely that you will have all of these side effects. But you might have some of them at the same time.

Common side effects

These side effects happen in more than 10 in 100 people (more than 10%). You might have one or more of them. They include:

Risk of infection

Increased risk of getting an infection is due to a drop in white blood cells. Symptoms include a change in temperature, aching muscles, cough, headaches, feeling cold and shivery, pain or burning feeling when weeing, or generally feeling unwell. You might have other symptoms depending on where the infection is.

Infections can sometimes be life threatening. You should contact your advice line urgently if you think you have an infection. 

Breathlessness 

You might be breathless and look pale due to a drop in red blood cells. This is called anaemia.

Bruising and bleeding 

This is due to a drop in the number of platelets in your blood. These blood cells help the blood to clot when we cut ourselves. You may have nosebleeds or bleeding gums after brushing your teeth. Or you may have lots of tiny red spots or bruises on your arms or legs (known as petechiae).

Allergic reaction

A reaction may happen during the infusion, causing a skin rash, itching, swelling of the lips, face or throat, breathing difficulties, fever and chills. Your nurse will give you medicines beforehand to try to prevent a reaction. Tell your nurse or doctor immediately if at any time you feel unwell. They will slow or stop your drip for a while

You might have difficulty swallowing or breathing that can be triggered by cold (such as cold air). This can start during the drip or up to a few hours after the infusion.

Tiredness (fatigue)

Tiredness and weakness (fatigue) can happen during and after treatment. Doing gentle exercises each day can keep your energy up. Don't push yourself, rest when you start to feel tired and ask others for help.

Feeling or being sick

Feeling or being sick is usually well controlled with anti sickness medicines. It might help to avoid fatty or fried foods, eat small meals and snacks and take regular sips of water. Relaxation techniques might also help.

It is important to take anti sickness medicines as prescribed even if you don’t feel sick. It is easier to prevent sickness rather than treat it once it has started.

Loss of appetite

You might lose your appetite for various reasons when you are having cancer treatment. Sickness, taste changes or tiredness can put you off food and drinks.

Increased sensitivity to the cold

Oxaliplatin can make you more sensitive to the cold. It can affect your throat causing it to feel as though it is difficult to breathe and swallow. This can happen whilst you have oxaliplatin or within a few hours of it finishing. It’s only temporary but can feel quite frightening.

Opening and closing the fridge or freezer, touching metal, eating or drinking cold foods and changes in temperature from the weather can trigger this.

It can help wearing gloves and avoid very cold food and drink before and after oxaliplatin.

Let your nurse know straight away if it's affecting your breathing and swallowing.

Diarrhoea

Diarrhoea means having loose, watery poo. This can happen during your treatment, or at any time between treatments.

Your healthcare team might give you medicines to take home. They will explain how and when to use them.

Acute cholinergic syndrome

Irinotecan can cause some people to develop a set of side effects during or within the first 24 hours after having the drug. These side effects include diarrhoea which may be severe. Other symptoms are - sweating, stomach cramps, increased production of saliva, and watery eyes. You may have an injection of atropine before the irinotecan to reduce these side effects.

Hair loss

You could lose all your hair. This includes your eyelashes, eyebrows, underarms, legs and sometimes pubic hair. Your hair will usually grow back once treatment has finished but it is likely to be softer. It may grow back a different colour or be curlier than before. 

Headaches

Tell your doctor or nurse if you keep getting headaches. They can give you painkillers to help.

Mouth sores and ulcers 

Mouth sores and ulcers can be painful. It helps to keep your mouth and teeth clean, drink plenty of fluids and avoid acidic foods such as lemons. Chewing gum can help to keep your mouth moist. Tell your doctor or nurse if you have ulcers.

You might also have inflammation of the food pipe (oesophagus) making it difficult and sore to swallow. Or inflammation and soreness of the back passage (anus).

Liver changes 

You might have liver changes that are usually mild and unlikely to cause symptoms. They usually go back to normal when treatment finishes. You have regular blood tests to check for any changes in the way your liver is working.

Skin problems

Skin problems include a skin rash, dry skin and itching. This usually goes back to normal when your treatment finishes. Your healthcare team can tell you what products you can use on your skin to help.

Soreness, redness and peeling on palms or soles of the feet 

The skin on your hands and feet may become sore, red, or may peel. You may also have tingling, numbness, pain and dryness. This is called hand-foot syndrome or palmar plantar syndrome.

Moisturise your skin regularly. Your healthcare team will tell you what moisturiser to use.

Numbness or tingling in the fingers and toes

Numbness or tingling in fingers or toes is often temporary and can improve after you finish treatment. Tell your healthcare team if you're finding it difficult to walk or complete fiddly tasks such as doing up buttons. 

Tummy (abdominal) pain

Tell your treatment team if you have this. They can check the cause and give you medicine to help. 

Heart problems 

Heart problems include changes to how your heart works. This can cause changes to your heart rhythm and your ankles can swell.

Tell your doctor or nurse straight away if you have any chest pain. Your doctor might ask you to have tests to check your heart, such as an electrocardiogram (ECG) .

Raised uric acid levels in the blood

High levels of uric acid in your blood can lead to a build up of crystals in body tissues and cause inflamed joints. You’ll have regular blood tests to check your levels. Drinking plenty of fluids helps to flush out the excess uric acid. You might also have medicines to control the uric acid levels.

Constipation

Constipation is easier to sort out if you treat it early. Drink plenty and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking. Tell your healthcare team if you think you are constipated. They can give you a laxative if needed.

Changes in levels of minerals in your blood

You may have changes in levels of minerals and salts in your blood, such as low potassium, magnesium, calcium and phosphate. You have regular blood tests during treatment to check this.

Bleeding from your nose

Tell your doctor or nurse if you have severe nosebleeds.

High temperature (fever)

If you get a high temperature, let your healthcare team know straight away. Ask them if you can take paracetamol to help lower your temperature.

Back pain

You might have back pain. Speak to your doctor if this is a problem for you. They can prescribe medicine to help. 

Cough

It is important to tell your doctor or nurse if you have a cough, or are breathless.

Inflammation around the drip or injection site

Tell your nurse straight away if you have any pain, redness, swelling or leaking around your drip site.

Taste changes

Taste changes may make you go off certain foods and drinks. You may also find that some foods taste different from usual or that you prefer to eat spicier foods. Your taste gradually returns to normal a few weeks after your treatment finishes.

High blood sugar levels

High blood sugar levels can cause headaches, feeling thirsty and blurred vision. You have regular tests to check your blood sugar levels. You may need to check your levels more often if you are diabetic.

Occasional side effects

These side effects happen in between 1 and 10 out of every 100 people (between 1 and 10%). You might have one or more of them. They include:

• blood clots that can be life threatening; signs are pain, redness and swelling where the clot is. Feeling breathless can be a sign of a blood clot in the lung. Contact your advice line or doctor straight away if you have any of these symptom

• brittle, chipped and ridged nails

• low levels of fluid in the body (dehydration)

• low mood (depression)

• difficulty sleeping (insomnia)

• kidney changes - you will have regular blood tests to check for this

• indigestion symptoms include heartburn, bloating and burping

• bleeding in your digestive system causing blood from the back passage (rectum). You might also notice blood in your poo

• dizziness

• high blood pressure

• problems passing urine such as burning or stinging when going, passing blood and changes to how often you go

• risk of falling

• bone or joint pain

• high blood pressure

• a rash that might be itchy, blistered or small red pimples

• sweating more than usual

• hiccups

• reddening of the skin (flushing)

• eye problems - this includes problems with your vision and watery, red and itchy eyes (conjunctivitis)

• inflammation of the membranes covering the brain and spinal cord (meninges). Symptoms are similar to meningitis (stiff neck, unable to look at bright light and headache)

• runny nose

Rare side effects

This side effects happens in fewer than 1 in 100 people (fewer than 1%). You might have one or more of them. They include:

• hearing loss

• changes to handwriting, hands and or fingers shaking, slow movement, stiff legs and or arms, voice changes, stooping, rigid facial expression (symptoms similar to Parkinson's disease)

• sleepiness

• feeling nervous

• skin sensitivity to sunlight

• an imbalance of substances in your blood (metabolic acidosis). It can cause confusion, tiredness, shortness of breath, faster heartbeat and headaches

• blockage or slow movement of the gut

• low blood pressure

• RPLS (reversible posterior leukoencephalopathy syndrome) - changes in the brain that are usually reversible, causing a sudden onset of symptoms including headaches, dizziness, confusion, fits (seizures) and changes to your vision

Coping with side effects

We have more information about side effects and tips on how to cope with them.

What else do you need to know?

Other medicines, foods and drink

Cancer drugs can interact with medicines, herbal products, and some food and drinks. We are unable to list all the possible interactions that may happen. An example is grapefruit or grapefruit juice which can increase the side effects of certain drugs.

Tell your healthcare team about any medicines you are taking. This includes vitamins, herbal supplements and over the counter remedies. Also let them know about any other medical conditions or allergies you may have.

Loss of fertility 

You may not be able to become pregnant or father a child after treatment with these drugs. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

Men might be able to store sperm before starting treatment. And women might be able to store eggs or ovarian tissue. But these services are not available in every hospital, so you would need to ask your doctor about this.    

Pregnancy and contraception

This treatment may harm a baby developing in the womb. It is important not to become pregnant or father a child while you are having treatment and for at least 9 months afterwards. Talk to your doctor or nurse about effective contraception before starting treatment.

Breastfeeding

Don’t breastfeed during this treatment. This is because the drugs may come through in your breast milk.

Treatment for other conditions

If you are having tests or treatment for anything else, always mention your cancer treatment. For example, if you are visiting your dentist.

Immunisations

Don’t have immunisations with live vaccines while you’re having treatment and for up to 12 months afterwards. The length of time depends on the treatment you are having. Ask your doctor or pharmacist how long you should avoid live vaccinations.

In the UK, live vaccines include rubella, mumps, measles, BCG, yellow fever and one of the shingles vaccines called Zostavax.

You can have:

• other vaccines, but they might not give you as much protection as usual
• the flu vaccine (as an injection)
• the coronavirus (COVID-19) vaccine - talk to your doctor or pharmacist about the best time to have it in relation to your cancer treatment

Members of your household who are aged 5 years or over are also able to have the COVID-19 vaccine. This is to help lower your risk of getting COVID-19 while having cancer treatment and until your immune system recovers from treatment.

Contact with others who have had immunisations - You can be in contact with other people who have had live vaccines as injections. Avoid close contact with people who have recently had live vaccines taken by mouth (oral vaccines) such as the oral typhoid vaccine. Sometimes people who have had the live shingles vaccine can get a shingles type rash. If this happens they should keep the area covered.

If your immune system is severely weakened, you should avoid contact with children who have had the flu vaccine as a nasal spray as this is a live vaccine. This is for 2 weeks following their vaccination.

Babies have the live rotavirus vaccine. The virus is in the baby’s poo for about 2 weeks and could make you ill if your immunity is low. Get someone else to change their nappies during this time if you can. If this isn't possible, wash your hands well after changing their nappy.

More information about this treatment

For further information about this treatment and possible side effects go to the electronic Medicines Compendium (eMC) website. You can find the patient information leaflet on this website.

You can report any side effect you have to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.