Nivolumab (Opdivo)

Nivolumab is a type of cancer treatment drug called immunotherapy. It’s a treatment for a number of different types of cancer. It’s also known as Opdivo.

It is pronounced ni-vol-you-mab

Depending on your cancer type you might have nivolumab on its own or in combination with other anti cancer drugs. 

You might have nivolumab as part of a clinical trial. 

How does nivolumab work?

Nivolumab is a type of immunotherapy called a monoclonal antibody. 

Immunotherapy work by blocking a protein that stops the immune system from working properly and attacking cancer cells. It helps to make your immune system find and kill cancer cells.

How do you have nivolumab?

You have nivolumab through a drip into your bloodstream.

You 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

If you don't have a central line

You might have treatment through a thin short tube (a cannula) that goes into a vein in your arm. You have a new cannula each time you have treatment.

How often do you have nivolumab?

You have nivolumab as a course of several cycles of treatment. This means that you have the drugs and then a rest to allow your body to recover.

It’s usually given every 2 to 4 weeks, over 30 or 60 minutes depending on your cancer type. Your doctor or nurse will tell you more about this.

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.

What are the side effects of nivolumab?

Side effects can vary from person to person. They also depend on what other treatment you are having. 

When to contact your team

Your doctor, pharmacist or nurse will go through the possible side effects. They will monitor you closely 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. 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:

Increased 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, headaches, feeling cold and shivery, and generally unwell. You might have other symptoms depending on where the infection is.

You might have a chest infection and may also have other symptoms that include a cough, feeling breathless, and a sore throat.

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

Skin problems

Symptoms of skin problems can include a rash, dryness, and itching.

Less commonly you might develop reddening of the skin, pale white patches of the skin (vitiligo), raised red crusty ring-like patches, it may get flaky, and your face might become red or you might develop spots.   

Rarely you might have a severe skin reaction that may start as tender red patches which leads to peeling or blistering of the skin. You might also feel feverish, and your eyes may be more sensitive to light. This is serious and could be life threatening.

Your doctor and nurse will check your skin regularly throughout your treatment.

Diarrhoea

Contact your advice line if you have 4 loose watery poos (diarrhoea) or more in 24 hours. Or if you have diarrhoea for more than 3 days. Or if you can't drink to replace the lost fluid.

Eat less fibre, avoid raw fruits, fruit juice, cereals and vegetables, and drink plenty of liquid to replace the fluid lost.

Tiredness and weakness (fatigue)

You might feel very tired and as though you lack energy.

Various things can help you to reduce tiredness and cope with it, for example exercise. Some research has shown that taking gentle exercise can give you more energy. It is important to balance exercise with resting.

Changes in blood sugar levels

You might have changes to your blood sugar levels. Some of the symptoms of high blood sugar levels (hyperglycaemia) are feeling very thirsty, having a dry mouth, passing urine very often, feeling tired, blurred vision, weight loss, feeling or being sick, and fruity smelling breath.

You might get low blood sugar (hypoglycaemia). Symptoms include: sweating, feeling hungry, shaky, trembling, fast heartbeat, dizziness, changes to your mood, and feeling tired.

Rarely you may develop diabetes.

High levels of pancreatic enzymes in your blood

You might have high levels of substances (enzymes) called amylase and lipase in your blood. It doesn’t usually cause symptoms. You have regular blood tests to check this and they return to normal when you stop treatment.

Feeling or being sick

Feeling sick is usually well controlled with anti sickness medicine. Avoiding fatty or fried foods, eating small meals and snacks, drinking plenty of water, and relaxation techniques, can all 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 treating it once it has started.

Tell your doctor or nurse if you feel sick. 

Changes in the levels of minerals in your body

Your blood contains different minerals and electrolytes. This treatment can change the levels of calcium, phosphate, magnesium, sodium, and potassium in your blood.

You have regular blood tests during treatment to check this.

Difficulty breathing or a cough

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

Loss of appetite

You might not feel like eating. It is important to eat as much as you can. Eating several small meals and snacks throughout the day can be easier to manage. You can talk to a dietitian if you are concerned about your appetite.

Constipation

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, nurse, or pharmacist if you are constipated for more than 3 days. They can prescribe a laxative.

Headaches

Tell your healthcare team if you keep getting headaches. They can check the cause and give you painkillers to help.

Changes to your blood levels

Your blood might show a low number of red blood cells (anaemia ) or platelets that helps your blood to clot. You will have regular blood tests to check your blood count levels.

Joint and muscle pain

You might feel some pain in your muscles and joints. Speak to your doctor or nurse about what painkillers you can take to help with this.

You may have a condition where you have severe pain around your shoulders, neck, and hips and you can feel very tired, but this condition is not very common. You may have aching, tender, or weak muscles that is not caused by exercise.

Tummy (abdominal) pain

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

General swelling

A build up of fluid (oedema) that may cause swelling in your arms, hands, ankles, legs, face, and other parts of the body. Contact your healthcare team if this happens to you.

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:

• a reaction during the infusion – you might get a rash, shortness of breath, redness or swelling of the face, and dizziness. Tell your healthcare team straight away if this happens
• inflammation of the bowel (colitis) – this can cause diarrhoea with or without blood or pus, tummy pain or cramps, tiredness, and problems having a poo
• heart problems – your heartbeat might get faster or become irregular. You might have a build up of fluid around the heart. Less commonly you might have inflammation around the heart, symptoms include, chest pain, shortness of breath even when you are resting, fever and generally feeling unwell. Call your advice line if you have any of these symptoms 
• chest pain – contact your advice line or call 999 immediately
• feeling dizzy  
• lung problems - such as infection (pneumonia) and fluid around the lungs (pleural effusion). You might have inflammation of the lungs - which can cause breathlessness or a cough
• thyroid problems - you might feel tired, gain or lose weight, sweat more than usual, or have a fast pounding heartbeat. You may also have pain around your neck
• weight loss
• numbness or tingling in the hands and feet
• high blood pressure (hypertension)
• mouth ulcers and sores
• dry mouth
• hair thinning or hair loss
• eye problems –your eyes might feel dry, and you may notice you have blurred vision. Less commonly your eyes may be painful and swollen
• kidney problems – symptoms include, high blood pressure, feeling or being sick, dark urine, blood in your urine, or passing less or more urine, feeling tired, a high temperature, and pain in your lower tummy
• liver changes - you may have tummy pain or feel weak or sick. Less commonly you may have loose poo, indigestion, or yellowing of the eyes or skin (jaundice). You have regular blood tests to check for any changes in the way your liver is working
• lack of fluid in your body (dehydration)

Rare side effects

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

• high levels of a type of white blood cell called eosinophils in your blood
• pituitary gland problems that can cause fatigue, vision problems, and headaches
• acid in the blood produced from diabetes (diabetic ketoacidosis)
• changes to hormone levels – symptoms might include feeling extremely tired, loss of appetite and weight loss, low blood pressure, feeling or being sick, and darkening of your skin
• imbalance of substances in your blood (metabolic acidosis) – it can cause confusion, tiredness, shortness of breath, and headaches
• inflammation of the blood vessels (vasculitis), pancreas, heart, stomach, and liver
• inflammation of tissues covering the brain and spinal cord (aseptic meningitis) - symptoms might include fever, headaches, neck pain or stiffness, feeling or being sick, or sensitivity to light
• a condition that causes general swelling of the lymph nodes, you may also have other symptoms that include a fever, a rash and you can feel very tired
• the parathyroid gland not producing enough parathyroid hormones. You may notice a tingling feeling in your fingers and toes, muscle cramps in particular in your legs, your skin look and feels dry and you feel generally weak
• the immune system attacking the nervous system (Guillain-Barre syndrome) - causing numbness, weakness, and pain in the body
• loss of the protective sheath around the nerve, symptoms include muscles weakness, uncontrolled movements and feeling very tired
• damage to nerves causing numbness and weakness, tingling or burning pain
• inflammation of the brain
• ulcers in the small bowel (the duodenum)
• a condition in which the immune system attacks the glands that make moisture for the body. This can affect tears and saliva (Sjogren’s syndrome)
• long term problems caused by inflammation in some organs and tissues. The most common site is the lungs (sarcoidosis)

Coping with side effects

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

What else do I 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.

Pregnancy and contraception

This drug may harm a baby developing in the womb. It is important not to become pregnant while you are having treatment and for 5 months afterwards.

Talk to your doctor or nurse about effective contraception before starting treatment. Let them know straight away if you become pregnant while you're having treatment.

Breastfeeding

It is not known whether this drug comes through into the breast milk. Doctors usually advise that you don’t breastfeed during this treatment.

Fertility

It is not known whether this treatment affects fertility in people. Talk to your doctor before starting treatment if you think you may want to have a baby in the future.

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.