What is ipilimumab?

Ipilimumab (YERVOY®) is used to treat:

It may sometimes be used to treat other types of cancer as part of a research trial. It is best to read this information with our general information about the type of cancer you have.

Ipilimumab is an immunotherapy drug. It may also be called a checkpoint inhibitor. Your doctor will talk to you about this treatment and the possible side effects before you agree (consent) to have treatment.

How is ipilimumab given?

You will usually be given ipilimumab at a day unit as an outpatient. Ipilimumab can be given on its own or with other cancer drugs such as nivolumab.

During treatment you usually see a cancer doctor, 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) may take a blood sample from you. You will see a doctor or nurse before you have treatment. They will ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your treatment.

Ipilimumab is given as a drip into a vein (intravenous infusion). It is given over about 90 minutes.

Your course of treatment

You usually have ipilimumab once every 3 weeks for up to 4 treatments. Your doctor, nurse or pharmacist will discuss your treatment plan with you.

Possible side effects

We explain the main side effects of this treatment here. We also include some other possible side effects.

You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may 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 or delayed side effects

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

This treatment may cause delayed side effects. These can start weeks, months, or sometimes more than a year, after you finish treatment.

If you have any symptoms or side effects that start during treatment or after treatment finishes, contact your doctor or hospital straight away. Side effects can become serious if they are not treated.

Your patient alert card

Your doctor, nurse or pharmacist will give you a card with information about your treatment on it. It is important to always have the card with you during treatment and after treatment finishes. You should show it to any doctor or healthcare professional you need to see.

Contact the hospital

Your nurse will give you telephone 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.

Sometimes side effects can become serious very quickly. It is important to contact the hospital straight away if you have new symptoms or side effects.

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) for more detailed information.

Side effects while treatment is being given

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.

Main side effects

Some of these side effects are rare. But it is important to know about them. They can become serious if you try to treat them yourself. Always contact your doctor or the hospital straight away if you have these side effects during treatment or after it finishes.

Diarrhoea or tummy pain

You may have diarrhoea or tummy pain.

Contact the hospital straight away if you have any of these symptoms during treatment or after it finishes:

  • passing stools (pooing) more than 4 times a day
  • waking up at night to pass stools
  • pain in your tummy (abdomen)
  • being sick
  • blood or mucus in your stools
  • a fever, with a temperature over 37.5°C (99.5°F).

You may need to go into hospital to have fluids through a drip (infusion) or other treatments, such as steroids.

Skin changes

This treatment may cause skin changes, including:

  • a rash
  • itching
  • patches of white or paler skin.

If you are out in the sun, use a sun cream with a high sun protection factor (at least SPF 30) to protect your skin. Always tell your doctor or nurse straight away if you notice any skin changes during treatment or after it finishes. You may need creams, steroids or other medicines. Your doctor may stop your treatment until the skin changes improve.

Rarely, a much more serious skin condition can develop. You may have a skin rash which then blisters, and your skin can peel. You may also feel unwell with flu-like symptoms such as a high temperature and joint pain. If you have any of these symptoms, contact your doctor or hospital immediately.

Effects on the lungs

This treatment can cause changes to the lungs. Contact the hospital straight away if you notice any of these changes during treatment or after it finishes:

  • breathlessness
  • a cough
  • wheezing
  • a fever, with a temperature over 37.5°C (99.5°F).

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

Effects on the liver

This treatment can affect how your liver works. You will have regular blood tests to check this. Your doctor may give you steroids if the blood tests show liver changes.

Sometimes liver changes can be serious. Contact the hospital straight away if you have any of these symptoms during treatment or after it finishes:

  • yellow skin or eyes
  • feeling very sleepy
  • dark urine (pee)
  • unexplained bleeding or bruising
  • loss of appetite.

You may need steroids or other treatments, and may be monitored until your liver recovers.

Weakness, numbness and tingling

This treatment can affect the nerves. This is not common but can become serious if it is not treated. These side effects may be mild to start with. Contact your doctor straight away if you have any of these symptoms during treatment or after it finishes:

  • problems fastening buttons or doing other fiddly tasks
  • any weakness, numbness or tingling in your arms, legs or face
  • headaches
  • any unexplained pain in other parts of your body.

You may need steroids and other treatments.

Effects on the kidneys

This treatment can affect how your kidneys work. This is not common but can become serious if it is not treated. You will have regular blood tests to check how your kidneys are working. Your doctor may give you steroids or other treatments if tests show kidney changes.

Contact the hospital straight away if you have either of these symptoms during treatment or after it finishes:

  • not passing urine (peeing)
  • only passing very small amounts of urine.

Hormone changes

This treatment may affect how your body makes hormones. Hormones control many different processes in the body. You will have regular blood tests to check some of your hormone levels. Your doctor may give you drugs to control your hormone levels, and to reduce the risk of side effects such as:

  • increased sweating
  • weight gain or weight loss
  • dizziness or fainting
  • feeling more hungry or thirsty than usual
  • loss of sex drive
  • passing urine (peeing) more often than usual
  • headaches that do not go away.

If you have any of these symptoms during treatment or after it finishes, tell your doctor straight away.

Effects on the heart

This treatment can affect the way the heart works. This is not common, but can be serious. You may have tests to see how well your heart is working. These may be done before, during, and sometimes after treatment.

Contact your doctor straight away if you have any of these symptoms during treatment or after it finishes:

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

If your symptoms are caused by this treatment, you may need steroids. You may be monitored in hospital for a time. Other conditions can cause these symptoms, but it is important to get them checked straight away.

Other possible side effects

Feeling tired

Feeling tired is a common side effect. But sometimes tiredness is a sign that treatment is affecting your hormone levels or nerves, and you may need treatment.

Contact your doctor straight away if you have either of these symptoms during treatment or after it finishes:

  • tiredness that gets worse
  • feeling weak or shaky.

If you feel sleepy, do not drive or use machinery.

Feeling sick

Ipilimumab can make you feel sick. Your doctor can give you anti-sickness drugs. Always tell your doctor if you feel sick or if you are being sick (vomiting). They can give you other anti-sickness drugs that may work better for you.

Loss of appetite

This treatment can affect your appetite. If you find it difficult to eat or you are losing weight, tell your nurse or dietitian. They will give you advice. They may give you food or drink supplements.

Constipation

This treatment can cause constipation. Here are some tips that may help:

  • Drink at least 2 litres (3½ pints) of fluids each day.
  • Eat high-fibre foods, such as fruit, vegetables and wholemeal bread.
  • Do regular gentle exercise, like going for short walks.

If you have constipation, contact the hospital for advice. Your doctor can give you drugs called laxatives to help.

Pain

You may get pain in the area of the melanoma. Ipilimumab can also cause pain in your muscles or joints, and spasms in your muscles. Tell your doctor if you get any of these side effects. They can prescribe painkillers or other medicines to help. Let them know if the pain does not get better.

Muscle and joint pain

This treatment can cause sore or weak muscles and stiff, sore or swollen joints. Contact your doctor straight away if you have any of these symptoms during treatment or after it finishes:

  • new aches or pains
  • new stiffness in a joint
  • swollen or red joints.

You may need steroids or other treatments such as painkillers.

Hair changes

Your hair may become thinner. Or you may notice changes in your hair texture or colour during treatment. Your hair will grow back when treatment finishes.

Eyesight changes

This treatment can affect your eyes and eyesight. If you have any of these symptoms during treatment or after it finishes, contact your doctor straight away:

  • sore or swollen eyes
  • eyes that are sensitive to light
  • changes to your eyesight.

You may need steroids or other treatments. You may also have an eye check with a specialist eye doctor (ophthalmologist).

Fluid build-up

You may gain weight, or your face, ankles and legs may swell. This improves slowly after your treatment has finished. Your doctor may give you drugs to help reduce the swelling.

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.

Other information

Driving

Ipilimumab may affect your ability to drive. Do not drive if you are:

  • dizzy
  • have blurred vision
  • feel very tired.

Talk to your doctor if you need more information.

Other medicines

Some medicines can affect ipilimumab 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.

Contraception

Your doctor will advise you not to get pregnant or make someone pregnant while having this treatment and for some time afterwards. The drugs may harm the developing baby. It is important to use effective contraception.

Breastfeeding

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

Fertility

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.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctor and nurse that you are having cancer treatment. Show them your Patient Alert Card. 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.

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