Nivolumab (OPDIVO®)

Nivolumab (OPDIVO) is a targeted therapy drug used to treat melanoma, non-small cell lung cancer or kidney (renal cell) cancer. It’s best to read this with our general information about the type of cancer you have.

Nivolumab is given into a vein. You usually have it as an outpatient. Your cancer doctor or nurse will tell you how often you will have it.

Like all targeted therapy drugs, nivolumab can cause side effects, some of which can be serious so it’s important to read the detailed information below. How targeted therapy affects people varies from person to person. Your healthcare team can talk to you more about this so that you know what to expect and give you advice on how to manage any side effects.

Tell your doctor or nurse straight away if you have a temperature, feel unwell or have severe side effects. And if you need to seek medical attention for any reason other than cancer, always tell the healthcare staff that you are having this treatment.

What is nivolumab?

Nivolumab is also called OPDIVO. It is a targeted therapy drug currently used to treat melanoma, non-small cell lung cancer or kidney (renal cell) cancer. It may be used to treat other cancers as part of a clinical trial.

Nivolumab belongs to a group of cancer drugs known as monoclonal antibodies. It is also known as an immune checkpoint inhibitor. These drugs are sometimes called targeted therapies because they target specific proteins (receptors) on the surface of cells.

During treatment, you will see a cancer doctor or nurse. This is who we mean when we mention a doctor or nurse in this information.

How targeted therapies work

This animation shows how targeted therapies work and what effect they have on the body.

About our cancer information videos

How targeted therapies work

This animation shows how targeted therapies work and what effect they have on the body.

About our cancer information videos


How nivolumab works

T cells are part of the body’s immune system and help the immune system to fight cancer. Nivolumab targets a protein called a PD-1 receptor that switches off T cells. Nivolumab attaches to the PD-1 receptor so the T cells can’t be switched off. This keeps the T cells active and may help shrink a tumour or stop it growing.


When nivolumab is used

Nivolumab is used to treat:

Nivolumab may also be used to treat other cancers as part of a clinical trial. In this case, you might have nivolumab on its own or with other cancer drugs.


How nivolumab is given

A nurse gives you nivolumab into a vein as a drip (intravenous infusion) over about an hour. They will often run the drip through a pump, which gives the treatment over a set time. You will have treatment in the chemotherapy day unit.

You usually have nivolumab every two weeks for as long as it keeps the cancer under control. Some people may have nivolumab every 4 weeks. Your cancer doctor or specialist nurse will talk to you about how long the treatment will take.

Allergic reaction during treatment

Nivolumab may cause an allergic reaction while it’s being given. Your nurse will check you for this. If you have a reaction, they will treat it quickly. Signs of a reaction can include:

  • a rash
  • feeling itchy, flushed or short of breath
  • swelling of your face or lips
  • feeling dizzy
  • having pain in your tummy, back or chest
  • feeling unwell.

Tell your nurse straight away if you have any of these symptoms.


Possible side effects of nivolumab

We explain the most common side effects of nivolumab here. We haven’t included all the less common and rarer side effects. You may get some of the side effects we mention, but you will not get them all.

Your doctor can prescribe drugs to help control some side effects. It is very important to take them exactly as your nurse or pharmacist has explained. This will help the drugs work as well as possible for you.

Your nurse will give you advice about managing side effects. Always tell your doctor or nurse about the side effects you have.

Contact the hospital

Your nurse will give you telephone numbers for the hospital. You can call them if you feel unwell or need advice any time of day or night. Save these numbers in your phone or keep them somewhere safe.

More information about this drug

We’re not able to list every side effect for this treatment here, particularly the rarer ones. For more detailed information you can visit the electronic Medicines Compendium (eMC).

Serious and life-threatening side effects

Some side effects of nivolumab happen during treatment but they can sometimes start weeks or months after finishing treatment.

Because nivolumab affects the immune system, it may cause inflammation in parts of the body. This can sometimes cause severe side effects which may be life-threatening. Some people may need treatment in hospital. You may be given steroids to reduce inflammation. Doctors may delay or stop nivolumab depending on the side effects.

It is important to follow the advice your cancer doctor or nurse give you. Do not try to treat these side effects on your own. They will tell you how and when to contact them about certain side effects. This includes after you have stopped having treatment with nivolumab.

Your chemotherapy team will give you a card to carry at all times to let people know you're taking nivolumab. This is in case you suddenly become unwell or have an accident.

Skin changes

Nivolumab can cause skin changes such as red patches or an itchy rash. This is a common side effect. Always tell your doctor or nurse about any skin changes. They can give you advice and may prescribe creams or medicines to help.

If the rash is on a lot of areas of skin or covers more than half of your body, tell your doctor straight away. You may need steroids, creams or tablets to treat it. Your doctor may stop the nivolumab until the rash improves.

Rarely, some people have a severe skin reaction. This can cause large blisters, peeling skin, or sores in your mouth. You may also have a fever (high temperature). If you have a severe reaction, you need to contact the hospital straight away and will probably need treatment in hospital.

Tiredness

Feeling tired is a common symptom of cancer and can also be a side effect of nivolumab. Try to pace yourself and get as much rest as you need. It helps to balance this with some gentle exercise, such as short walks. If you feel sleepy, don’t drive or operate machinery. If your tiredness is a lot worse after starting nivolumab, let your doctor know. This can be a sign of changes in your hormone levels.

Effects on hormone levels

Nivolumab can cause inflammation of some glands that make hormones. Glands that may be affected include the pituitary gland, adrenal glands and thyroid gland. If a gland is affected, you may not have enough of the hormone that the gland makes. Changes to hormone levels are often found with a blood test before you have symptoms.

Tell your doctor if you have any of the following:

  • headaches that don’t go away
  • extreme tiredness or sleepiness
  • feeling cold
  • weight gain
  • feeling dizzy or faint
  • changes in behaviour or mood, such as irritability or feeling confused.

Diarrhoea or tummy pain

It’s important to follow the advice your nurse or doctor gives you about diarrhoea. Contact the hospital if you have diarrhoea. They will give you advice on what to do and if you should see a doctor. They may give you anti-diarrhoea tablets to take at home. Mild diarrhoea (up to four loose bowel motions a day) can usually be controlled with these. Drink plenty of fluids to stop you becoming too dehydrated.

Let the hospital know immediately if you have pain in your tummy (abdomen), vomiting, blood or mucus in your bowel motion, or a fever. You may need to go into hospital to have a drip (infusion) and other treatments. If your bowel is inflamed (colitis), you may need steroids.

Effects on the lungs

Nivolumab can cause changes to the lungs. Always tell your doctor if you develop wheezing, a cough, a fever or feel breathless. You should also let them know if any existing breathing problems get worse. If necessary, they can arrange for you to have tests to check your lungs.

Changes in the way the kidneys and liver work

Nivolumab can affect how your kidneys and liver work. If your liver is affected, you may become jaundiced. This means that the skin and whites of your eyes may look yellow or your urine may look very dark. Tell your nurse or doctor if you notice this.

Tell your doctor straight away if you stop passing urine or are only passing very small amounts. This may mean the nivolumab has affected your kidneys.

You will have blood tests during and after treatment to check how well your kidneys and liver are working.

Raised blood sugar levels

Nivolumab may raise your blood sugar levels. Your nurse will check your blood regularly for this. Symptoms of raised blood sugar include feeling thirsty, needing to pass urine more often and feeling tired. Tell your doctor or nurse if you have these symptoms.

If you have diabetes, your blood sugar levels may be higher than usual. Your doctor will talk to you about how to manage this.

Feeling sick

Your doctor can prescribe anti-sickness (anti-emetic) drugs to help prevent or control sickness. Take the drugs exactly as your nurse or pharmacist explains to you. If the sickness isn't controlled, or if it continues, tell your doctor. They can prescribe other anti-sickness drugs that may work better for you.

Sore mouth

Your mouth may become sore and you may get ulcers. This can make you more likely to get an infection in your mouth. Gently clean your teeth or dentures morning, night and after meals. Use a soft-bristled or children’s toothbrush. Your nurse might ask you to rinse your mouth regularly or use mouthwashes. It’s important to follow any advice you are given and to drink plenty of fluids.

Tell your nurse or doctor if you have any problems with your mouth. They can prescribe medicines to prevent or treat mouth infections and reduce any soreness.

Dry mouth

You may get a dry mouth. Drink plenty of fluids and add sauces and gravies to your food to keep it moist. If you have dry lips, using a lip balm or Vaseline® can help.

Constipation

Nivolumab may make you constipated. Drinking at least two litres (three and a half pints) of fluids every day will help. Try to eat more foods that contain fibre (such as fruit, vegetables and wholemeal bread) and do some regular gentle exercise.

Numb or tingling hands or feet

These symptoms are caused by the effect of nivolumab on nerves. It’s called peripheral neuropathy. You may also find it hard to fasten buttons or do other fiddly tasks.

Tell your doctor if you have these symptoms. They may stop treatment to help this improve.

Rarely, nivolumab causes serious problems with the nerves. Contact the hospital straight away if you have unusual weakness, numbness or tingling in your arms, legs or face, or pain that is getting worse.

Hair loss

Your hair may thin but you’re unlikely to lose all the hair from your head. Your nurse can give you advice about coping with hair loss.

Muscle or joint pain

You may get pain in your joints or muscles during treatment. Tell your doctor if this happens so they can prescribe painkillers. Let them know if the pain does not get better. Try to get plenty of rest. Taking regular warm baths may help.

High blood pressure

Tell your doctor or nurse if you have ever had any problems with your blood pressure. Your nurse will check it regularly during your treatment. Let them know if you have any headaches.

Fever

You may have a fever or chills when taking nivolumab. Tell your specialist doctor or nurse if this happens.

Build up of fluid (oedema)

You may put on weight or your ankles and legs may swell because of fluid building up. Tell your doctor or nurse if this happens as they can give you advice or medicines that can help.

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 nivolumab

Risk of infection

Nivolumab can reduce the number of white cells in your blood. This will make you more likely to get an infection. When they are low, it’s called neutropenia.

Contact the hospital straight away on the contact number you’ve been given if:

  • your temperature goes over 37.5°C (99.5F)
  • 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.

You will have a blood test before having more nivolumab. If your blood cells are still low, your doctor may delay your treatment.

Bruising and bleeding

Nivolumab 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 can’t explain. This includes nosebleeds, bleeding gums, blood spots or rashes on the skin. Some people may need a drip to give them extra platelets.

Anaemia (low red blood cells)

Nivolumab can reduce the number of red blood cells in your blood. These cells carry oxygen around the body. If they are 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 (blood transfusion).

Swollen lymph nodes

Nivolumab can make the lymph nodes swell up. Let your doctor know if you notice any new lumps in your neck, armpits or groin.

Eye problems

Nivolumab may make your eyes sore and red. It can also cause blurry vision or your eyes may become more sensitive to light. Always tell your doctor or nurse if you have eye pain or notice any change in your vision.

Changes to your heartbeat

Nivolumab may cause changes to your heartbeat. Let your doctor know if you notice your heartbeat is irregular, or slow or fast.


Other information

Contraception

Your doctor will advise you not to become pregnant or to father a child during treatment. This is because nivolumab may harm a developing baby. It’s important to use effective contraception during and for at least five months after treatment. You can talk to your doctor or nurse about this.

Breastfeeding

Women may be advised not to breastfeed during treatment with nivolumab. This is in case there is nivolumab in the breast milk.

Fertility

Nivolumab may affect your fertility (being able to get pregnant or father a child). If you are worried about this, you can talk to your doctor or nurse before treatment starts.

Low salt diet

Nivolumab contains salt (sodium). Let your doctor know if you are on a low salt diet.

Other medicines

Tell your doctor about any medicines you are taking, including ones you can buy for yourself, complementary therapies and herbal drugs.

Medical and dental treatment

If you need to go into hospital for any reason other than cancer, always tell the doctors and nurses that you are having nivolumab or have had previous treatment with it. Tell them the name of your cancer doctor so they can ask for advice.

Talk to your cancer doctor or nurse if you think you need dental treatment. Always tell your dentist if you are having nivolumab.