What is nivolumab (Opdivo®)?

Nivolumab (Opdivo®) is used to treat:

It may sometimes be used to treat other cancers. It is best to read this information with our general information about the type of cancer you have.

Nivolumab 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 nivolumab is given

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

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.

Nivolumab is given as a drip into a vein (intravenous infusion). It is given over either 30 minutes or 1 hour, depending on the dose.

Your course of treatment

You may have nivolumab once every 2 weeks or once every 4 weeks. 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.

Side effects while treatment is being given

Some people may have side effects while they are being given this treatment or shortly after they have it:

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. Side effects can become serious if they are not treated. If you have any symptoms or side effects that start during treatment or after treatment finishes, contact your doctor or hospital straight away. These may start weeks, months or sometimes more than a year after treatment.

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.

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.

Swollen pancreas (pancreatitis)

This treatment can make your pancreas swell (pancreatitis). Tell your doctor straight away if you get a sharp pain in your upper tummy area (abdomen) with sickness and vomiting.

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.

Raised blood sugar levels

This treatment may raise your blood sugar levels. You will have regular blood tests to check this. Symptoms of raised blood sugar include:

  • feeling thirsty
  • needing to pass urine (pee) more often
  • feeling tired.

Tell your doctor or nurse if you have these symptoms during treatment or after it finishes.

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

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.

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.

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.

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.

Effects on the brain and spinal cord

This treatment can affect the brain, the lining of the brain and the spinal cord. This is not common but can be serious. During treatment or after treatment finishes, contact a doctor straight away if:

  • you have a stiff neck
  • you have a headache
  • you have a fever or chills
  • you vomit
  • your eyes are sensitive to light
  • you feel confused or sleepy.

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

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.

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.

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).

Other possible side effects of nivolumab

Low number of white blood cells

This treatment can reduce the number of white cells in your blood. These cells fight infection. Tell your doctor or nurse if you have any signs of an infection. These include:

  • a cough
  • a sore throat
  • diarrhoea
  • needing to pass urine (pee) often.

Contact your doctor or the hospital straight away if:

  • your temperature goes over 37.5°C (99.5°F)
  • you suddenly feel unwell, even with a normal temperature

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.

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.

Feeling sick

You may feel sick during 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 straight away. They will give you advice and may change the anti-sickness drug to one that works better for you.

Swollen lymph nodes

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

Fever

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

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.

Hair loss

Your hair may get thinner. But you are unlikely to lose all the hair from your head. Your nurse can give you advice about coping with hair loss.

Other information

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
  • breathlessness
  • 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.

Other medicines

Some medicines can affect cancer treatment 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 father a child while having this treatment and for at least 5 months afterwards. The drugs may harm the developing baby. It is important to use effective contraception during your treatment.

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.

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.