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Nivolumab information sheet


This leaflet provides information for patients being treated with nivolumab. The leaflet will explain what nivolumab is and how and when it will be given. It will also tell you about any common side effects you may experience. Contact telephone numbers and information on how to get more information about nivolumab are at the end of this leaflet.


What is nivolumab and why am I getting it?

Nivolumab is a treatment that helps your immune system attack and destroy cancer cells. Nivolumab is used to treat your type of drug, but it is not a chemotherapy drug.


How often will I get nivolumab?

In order for this treatment to be most effective, it is given at specific time intervals. It is usual to have nivolumab every two weeks. Your doctor will discuss with you how long you will have to continue having the treatment.


How often will I see your specialist ?

You will need to be seen at the outpatient clinic every two weeks. This will be a few days before each treatment with nivolumab. At each outpatient clinic, the medical team prescribing your nivolumab will check how you are doing, and discuss any problems you may have.


You will have regular blood tests and we will check how you are doing and discuss any problems you may have. This is so we can see how the treatment affects you. If we are happy with your blood results, your chemotherapy will be prescribed.


How is nivolumab given?

Nivolumab is given through a drip into a vein in the back of your hand or arm.


Where will my treatment be given?

The treatments will be given in the day case treatment areas in Velindre.


How long will I be in hospital?

Nivolumab treatment is given over an hour; however, please allow approximately two hours for your appointment. You are welcome to bring someone to stay with you during your treatment. There is limited space in the waiting areas and in the treatment room, so there is usually no room for more than one person. Treatment areas are not suitable for small children.


Reactions during treatment

If you experience any of the following during the treatment, tell your nurse straight away:


  • Feeling hot and feverish
  • Numbness or tremors
  • headache
  • Dizziness or weakness
  • Breathing problems
  • Rash
  • Feeling sick or vomiting


If you experience any of these, we will slow down or stop the treatment until you feel better. Treatment can then start again, usually without any further problems.


What are the potential side effects?

Some people tolerate very few side effects, but others may have more. Most of the side effects occur because Nivolumab affects the immune system and causes inflammation in other parts of the body, such as the skin, the intestines and the glands that produce hormones. Most, if not all, of the serious side effects can be managed by immediate use of steroid medication, either as tablets or through a drip. Hospitalization may be necessary however, in cases of severe immune-related reactions.


Most of the time, side effects are mild and can be easily managed at home. But if you have more serious side effects, it is important that you contact Velindre Cancer Centre. The telephone number is on page 10. Further details about when to contact Velindre are included in the individual side effects listed below.


If you are sent to another hospital, you must tell the doctors and nurses that you are taking Nivolumab. It is possible that you are having a reaction produced by the body's immune system, and that you should start taking steroids. The doctors and nurses need to contact Velindre Cancer Center for advice. They can either call the chemotherapy hotline or speak to your oncologist.


Effects on your gut

This treatment can cause either constipation or diarrhoea.

  • If you become constipated, it is important that you increase the level of fluids you drink. You may need exercise medication. You can talk to us or your GP for advice.


  • If you get diarrhoea, it is important that you drink plenty of fluids. Medicine is available to control diarrhoea. If you open your bowel four times or more than is normal for you over a 24 hour period, contact Velindre Cancer Center immediately. The phone number is on page 10.



If you have any of the symptoms below, you must notify Velindre Cancer Center immediately. The phone numbers are on page 10.


  • if you open your bowels four or more times than is normal for you over a 24 hour period.
  • you should also contact us if you have any problems with diarrhea or an increase in the number of times you open your bowels lasting more than three days.
  • if you get severe stomach pains
  • or if there is blood or mucus in your stools


It is possible that a small number of patients could be at risk of suffering from inflammatory bowel disease (colitis) or perforation.


Effects on the skin

You may develop an itchy rash on the skin, which can be treated with a moisturizing cream. You may have a sore mouth; if this happens, we can recommend mouthwashes for you. However, if you get a severe skin reaction, you may need to be treated in hospital.


Contact Velindre Cancer Center in the following circumstances:


  • If the rash covers more than half of your body and is painful.
  • If you have blisters on your skin or if your skin is peeling
  • If your skin feels very raw.
  • If you have a fever.
  • If you have painful joints.
  • If you have itchy eyes.
  • If you have ulcers in your mouth.


Effects on your hormone producing glands


Nivolumab can cause inflammation of the glands that produce different hormones (chemicals that control many body functions) in the body. Symptoms will vary according to the glands that are affected.


It is important to contact Velindre Cancer Center if you suffer from the following:

  • a headache that won't go away
  • feeling sick and being sick
  • severe mood swings
  • tired (it's common to feel a little tired or very tired with nivolumab)
  • marked increase in energy levels or feeling restless.
  • feeling forgetful and/or confused

Effects on the liver


This is uncommon, but if you are affected, you may feel more tired than usual and you may also feel sick or vomit. Your doctor will give you anti-nausea medication.


Contact Velindre Cancer Center in the following circumstances:


  • If you vomit more than once in 24 hours, even though you are taking anti-nausea medicine.


More serious effects on the liver are not very common, but can be very serious, so you should contact Velindre Cancer Center in the following circumstances:


  • If your skin and the whites of your eyes turn yellow
  • If your urine is darker than usual.
  • If you notice any unusual bruising or bleeding




Fatigue and fatigue


Nivolumab may make you feel more tired than usual. It is important to listen to your body and rest if you need to, but you should continue with your normal activities if you feel able to do so. For some people, a little light exercise can be beneficial as well as rest. If you sleep more than half the day during the day, you should contact Velindre Cancer Center on the number on page 10.


Loss of appetite for food

You may lose your appetite, and some people may feel sick while taking nivolumab, but this can usually be well controlled with anti-nausea medication. If you are sick more than once in 24 hours despite taking anti-nausea medication regularly, you should stop taking your nivolumab tablets and contact Velindre Cancer Center for advice. The phone number is on page 10.


Effects on your nerves


You may feel numbness or tingling in your hands or feet.


Contact Velindre Cancer Center in the following circumstances:


  • If the numbness in your hands and feet is severe.
  • If you start to feel weakness in your arms or legs
  • If you feel dizzy.
  • If you become very sleepy and have trouble staying awake.


Myalgia (muscle pain)


Some patients will experience myalgia, which is pain in their muscles or joints. If you already have painkillers at home, they may help relieve the pain. If this does not work, contact Velindre Cancer Centre. The phone number is on page 8.




Your risk of catching infections will be higher as this treatment may reduce your white blood cells which help fight infections. Contact Velindre Cancer Center immediately if you develop any symptoms of infection, for example, flu-like symptoms or a temperature above 37.5°. The phone number is on page 8.



Loss of hair

Nivolumab should not make you lose your hair. However, it can make some people's hair thin. We have a leaflet that tells you more about coping with hair loss. Ask your nurse if you would like a copy.










Other side effects :


You may suffer from these additional side effects - if so, please contact Velindre Cancer Centre:


  • Passing water more often and/or more thirst.
  • Dizziness or lightheadedness.
  • Feeling short of breath, dry cough or having difficulty breathing.
  • Pass water less often.
  • Blurred vision or red, sore eyes.


Other information

It is important that you do not become pregnant, breast-feed or become a father while you are having treatment and for at least one year after treatment.



Side effects can persist for up to six months after treatment. If you have any side effects, contact your consultant.













Patient information leaflets from manufacturers

Felindre leaflets give information about common and very common side effects: if you would like more information about the less common side effects, please refer to the manufacturers' patient information leaflets, available from Felindre's pharmacy, and/or on the internet at . However, patients may sometimes find these leaflets difficult to read. If you would like a copy, ask your doctor or Velindre pharmacy.


This leaflet has been written by health professionals. The information in this leaflet is based on evidence. The leaflet has been approved by doctors, nurses and patients. It is reviewed and updated every two years.




















Contact telephone numbers


Felindre Cancer Center 029 2061 5888

If you are home sick and need urgent attention at any time of the day or night, ask for the chemotherapy pager.




Pharmacy 029 2061 5888 ext 6223

Monday – Friday 9am – 5pm for inquiries about your medicines.




Cancer helpline 0808 808 1010

Tenovus - free

7 days a week 8am – 8pm for general cancer enquiries.












Prepared January 2016