Find out about the side effects of irinotecan chemotherapy.
Tell your doctor or nurse if you have any side effects so they can help you manage them. Your nurse will give you a contact number to ring if you have any questions or problems. If in doubt, call them.
Common side effects
Each of these effects happens in more than 1 in 10 people (10%). You might have one or more of them.
Between 1 and 2 out of 10 people (10 to 20%) having irinotecan have severe diarrhoea.
As well as diarrhoea you may have:
- increased sweating
- increased saliva production
- eye problems including watery eyes and changes to your eyesight
- stuffy nose
- abdominal cramps
Your doctor will give you instructions if diarrhoea starts more than 24 hours after your treatment. This includes taking anti diarrhoea medicines and drinking plenty. Contact your doctor or nurse immediately if you:
- still have diarrhoea 48 hours after starting anti diarrhoea medicines
- feel sick and are being sick as well as having diarrhoea
- have a temperature above 38C as well as diarrhoea
Ask your nurse about soothing creams to apply around your back passage (anus). The skin in that area can get very sore and even break if you have severe diarrhoea.
Signs of an infection include headaches, aching muscles, a cough, a sore throat, pain passing urine, or feeling cold and shivery.
Chemotherapy reduces the number of white blood cells in the blood. This increases your risk of infections. White blood cells help fight infections.
When the level is very low it is called neutropenia (pronounced new-troh-pee-nee-ah).
You have antibiotics if you develop an infection. You might have them as tablets or as injections into the bloodstream (intravenously). To have them into your bloodstream you need to go into hospital.
Chemotherapy makes the level of red blood cells fall (anaemia). Red blood cells contain haemoglobin, which carries oxygen around the body. When the level of red blood cells is low you have less oxygen going to your cells. This can make you breathless and look pale. Tell your doctor or nurse if you feel breathless.
You have regular blood tests to check your red blood cell levels. You might need a blood transfusion if the level is very low. After a transfusion, you will be less breathless and less pale.
You can also feel tired and depressed when your blood count is low and feel better once it is back to normal. The levels can rise and fall during your treatment. So it can feel like you are on an emotional and physical roller coaster.
You might notice you:
- bruise more easily
- have nosebleeds
- have bleeding gums when you brush your teeth
This is due to a drop in the number of platelets that help clot your blood.
If your platelets get very low you may have lots of tiny red spots or bruises on your arms or legs called petechiae.
Tell your doctor or nurse straight away if you have petechiae.
You have a platelet transfusion if your platelet count is very low. It is a drip of a clear fluid containing platelets. It takes about 15 to 30 minutes. The new platelets start to work right away.
You might feel very tired during your treatment. It might take 6 months to a year for your energy levels to get back to normal after the treatment ends. A low red blood cell count will also make you feel tired.
You can do things to help yourself, including some gentle exercise. It’s important not to push yourself too hard. Try to eat a well balanced diet.
Talk to your doctor or nurse if you are finding the tiredness difficult to manage.
You might lose your appetite for various reasons when you are having cancer treatment. Sickness, taste changes or tiredness can all put you off food and drinks.
- Eating several small meals and snacks throughout the day can be easier to manage.
- Ask your doctor or nurse to recommend high calorie drinks to sip between treatments, if you are worried about losing weight.
- You can make up calories between treatments for the days when you really don’t feel like eating.
- Drink plenty of fluids even if you can't eat.
- Don't fill your stomach with a large amount of liquid before eating.
- Try to eat high calorie foods to keep your weight up.
Feeling or being sick can start a few hours after treatment and last for a few days. Anti sickness injections and tablets can control it. Tell your doctor or nurse if you feel sick. You might need to try different anti sickness medicines to find one that works.
- Avoid eating or preparing food when you feel sick.
- Avoid foods that are fried, fatty, or have a strong smell.
- Drink plenty of liquid to stop you from getting dehydrated.
- Relaxation techniques help control sickness for some people.
- Ginger can help – try it as crystallised stem ginger, ginger tea or ginger ale.
- Fizzy drinks help some people when they’re feeling sick.
You could lose all your hair. This includes your eyelashes, eyebrows, underarm, leg and sometimes pubic hair. It usually starts gradually within 2 to 3 weeks after treatment begins.
Your hair will grow back once your chemotherapy treatment has finished. This can take several months and your hair is likely to be softer. It can also grow back a different colour or be curlier than before.
- Ask about getting a wig before you start treatment so you can match the colour and texture of your real hair.
- You could choose a wig for a whole new look.
- Think about having your hair cut short before your treatment starts.
- Some people shave their hair off completely so they don't have to cope with their hair falling out.
- Wear a hairnet at night so you won't wake up with hair all over your pillow.
Your mouth might become sore about 5 to 10 days after you start treatment. It usually clears up gradually 3 to 4 weeks after your treatment ends.
Your doctor or nurse can give you mouthwashes to help prevent infection. You have to use these regularly to get the most protection.
Tell your doctor or nurse straight away if your mouth is really sore. They can help to reduce the discomfort. Some people need strong painkillers to help control mouth pain so they can eat and drink.
- Clean your mouth and teeth gently every morning and evening and after each meal.
- Use mouthwashes as advised by your doctor or nurse. Let them know if the mouthwash stings. They can tell you to stop using it or dilute it with water.
- Use dental floss daily but be gentle so that you don't harm your gums, and don't floss if you have very low platelets.
- Avoid neat spirits, tobacco, hot spices, garlic, onion, vinegar and salty food.
- Moisten meals with gravies and sauces to make swallowing easier.
- Avoid acidic fruits such as oranges, grapefruit or lemons.
Tell your doctor or nurse if you have this.
Occasional side effects
Between 1 and 10 in every 100 people have one or more of these effects.
Constipation is easier to sort out if you treat it early. Drink plenty of fluids and eat as much fresh fruit and vegetables as you can. Try to take gentle exercise, such as walking.
Tell your doctor or nurse if you are constipated for more than 3 days. They can prescribe a laxative.
The changes are usually very mild and unlikely to cause symptoms. They will almost certainly go back to normal when treatment is finished.
You have regular blood tests throughout your treatment so your doctor can check this.
Tell your doctor or nurse if you have headaches, nose bleeds, blurred or double vision or shortness of breath. Your nurse will check your blood pressure regularly.
A rash can also be itchy. Tell your doctor or nurse if you have a skin rash. They can prescribe medicine to stop the itching and soothe your skin.
Don’t drive or operate machinery if you have this.
Blood clots can develop in the deep veins of your body, usually the leg. This is called deep vein thrombosis (DVT). A blood clot can be very serious if it travels to your lungs (pulmonary embolism), although this isn’t common.
Symptoms of a blood clot include:
• pain, redness and swelling around the area where the clot is and may feel warm to touch
• pain in your chest or upper back – dial 999 if you have chest pain
• coughing up blood
You could also have:
- muscle cramps and twitches
- pins and needles
- temporary speech problems
- temporary eyesight changes
More information about this treatment
We haven't listed all the very rare side effects of this treatment. For further information see the electronic Medicines Compendium (eMC) website.
You can report any side effect you have that isn’t listed here to the Medicines Health and Regulatory Authority (MHRA) as part of their Yellow Card Scheme.