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Patient information - Metastatic - Nivolumab maintenance (flat dosing)

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This information sheet outlines your treatment. It should be reviewed together with your doctor, nurse or pharmacist to address any questions or concerns.

The treatment schedule below explains when you will receive the medicines and how they are given.  Your doctor, nurse or pharmacist will be able to explain how your treatment works in more detail.

It is important to understand that nivolumab is not a traditional chemotherapy drug and has a different way of working. It is an immunotherapy treatment (also called anticancer drug) that works with your immune system to detect and destroy cancer cells.

This treatment may be used to treat different types of cancer. Your doctor will advise you why you are receiving this treatment.

The treatment schedule below explains how the immunotherapy drug is given.

Nivolumab
This treatment cycle is repeated every 28 days. It can also be repeated every 14 days at a lower dose. Your doctor will advise you of how often you will have your treatment and the number of treatments you will have. This treatment follows the 4 cycles of combination treatment of ipilimumab and nivolumab that you received every 21 days.
Day Treatment How it is given How long it takes
1 Nivolumab 
(nee-vol-u-mab)		 By a drip into a vein About 60 minutes
Prior to your treatment tell your doctor if you are taking any other medicines (e.g. corticosteroids, immunosuppressive therapy), have or ever had chronic liver infections e.g. hepatitis B (HBV) or C (HCV), human immunodeficiency virus (HIV) or an organ transplant.

 

 

 

 

Emergency

It is important that you tell your doctor or nurse immediately if you develop any of the symptoms listed below in the side effects section. If you can't contact your doctor or nurse, go to your nearest hospital Emergency Department for help.

Emergency contact details

Ask your doctor or nurse from your treating team who to contact if you have a problem

Daytime:
Night/weekend:
Other instructions:

During your treatment immediately tell the doctor or nurse looking after you if you get any of the following problems: 

  • leaking from the area where the drugs are being given 
  • pain, stinging, swelling or redness in the area where the drugs are being given
  • a skin rash, itching, feeling short of breath, wheezing, fever, shivers, or feeling dizzy or unwell in any way (allergic reaction).

Treatment delays

There may be times when your treatment is delayed. This can happen if your doctor thinks you are likely to have severe side effects, if you get severe side effects, if your blood counts are affected and causing delays in treatment, or if you are finding it hard to cope with the treatment. Your doctor will explain if you need any delays to your treatment and the reason why.

Blood tests and monitoring 

You will need to have a blood test before you start treatment and regularly throughout your treatment. Your doctor or nurse will tell you when to have these blood tests.

Other medications given during this treatment

  • Steroids: you may be given some steroid tablets to help reduce immune-related side effects. Your doctor or nurse will tell you how and when to take the steroids. You may need to monitor your blood sugar levels closely while you are taking steroids. If you have diabetes, your diabetic medication may need to be adjusted because of the effects of steroids. Speak to your diabetes advisor.

Cancer treatments can cause damage to normal cells in your body, which can cause side effects. Everyone gets different side effects, and some people will have more problems than others.

The table below shows some of the side effects you may get with this treatment. You are unlikely to get all of those listed and you may also get some side effects that have not been listed.

Tell your doctor or nurse about any side effects that worry you. Follow the instructions below and those given to you by your doctor or nurse.

Immunotherapy may cause serious immune reactions against your own body. These are called immune-related adverse events. They may occur during your treatment, or after your treatment has ended. Immunotherapy can affect many parts of your body. Some side effects can cause severe or life threatening conditions, so even mild side effects must be reported immediately. Some side effects are more common; examples: fatigue, thyroid gland problems, diarrhoea, joint pain and skin rash. Some side effects are less common; examples: pituitary gland problems, bowel inflammation, arthritis and kidney problems. Some side effects are rare but can be serious or life threatening; examples: heart problems, blood problems, lung problems, eye problems and nervous system problems. Do not try to treat any of these symptoms yourself without talking to your doctor or nurse first.You will be given an information pack at the start of your treatment. This contains an alert card which you should carry with you at all times. Bring this alert card with you to hospital, especially if you are unwell or attending the emergency department. 

Immune related side effects

Heart problems

  • You may get:
    • chest pain or tightness
    • shortness of breath 
    • swelling of your ankles 
    •  an abnormal heartbeat.
  • Heart problems are uncommon but potentially fatal. If heart problems were to occur, symptoms usually start within the first 3 months of treatment, but can happen at any time even after the treatment has finished.
  • Tell your doctor if you have a history of heart problems or high blood pressure.
  • Before or during treatment, you may be asked to have a test to see how well your heart is working.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get any of the symptoms listed above.

Bowel and stomach inflammation

  • You may get:
    • bowel motions (stools, poo) that are more frequent or more liquid (diarrhoea)
    • blood or mucous in your stool 
    • dark, tarry, or sticky bowel motions
    • bloating, cramping, pain or tenderness in your stomach area. 
  • Inform your doctor or nurse immediately if you get diarrhoea
  • Take your anti-diarrhoeal or steroid medication as directed by your doctor.
  • Drink plenty of fluids (unless you are on a fluid restriction).
  • Eat and drink small amounts more often.
  • Avoid spicy foods, dairy products, high fibre foods, and coffee.
  • Tell your doctor or nurse immediately, or go to your nearest hospital Emergency Department if your diarrhoea is not controlled despite taking anti-diarrhoea medicine, severe stomach pains and bloating, and/or if you feel dizzy or light-headed.

Blood problems

  • Blood problems are infrequent but can be serious.
  • You may feel dizzy, light-headed, tired, weak and appear more pale than usual.
  • You may get:
  • dark, tarry bowel motions (stools, poo)
  • blood in your urine or not urinating as often
  • dark-coloured urine
  • yellowing of the whites of your eyes, and/or your skin
  • pinpoint red spots on your skin
  • unexplained bleeding
  • major bruising
  • a fever
  • shortness of breath
  • a severe headache
  • confusion
  • faster heartbeat than normal
  • Tell your doctor or nurse immediately or go to the nearest hospital Emergency Department if it has been longer than 12 hours since you have emptied your bladder or if you get any of the symptoms listed above.

Liver damage

  • You may get: 
    • fatigue
    • severe nausea and vomiting
    • weight loss
    • bruising or bleeding more easily
    • pain or tenderness on the right side of your stomach area
    • dark coloured urine
    • yellowing of the whites of your eyes and/or your skin 
       
    • itchy skin 
    • drowsiness
  • You will have regular blood tests to check how well your liver is working.
  • Take your steroid medication as directed by your doctor.
  • Tell your doctor or nurse as soon as possible if you notice that your urine is a dark colour, the whites of your eyes or skin look yellow, if you have unexplained bruising or bleeding or if you have severe stomach pain.

Muscle and joint problems

  • You may get:
  • muscle or joint stiffness, especially after a period of rest
  • muscle weakness
  • pain in your muscles or joints
  • joint swelling
  • tiredness
  • headaches
  • Take your pain relief or steroid medication as directed by your doctor.
  • Tell your doctor or nurse as soon as possible if you get any of the symptoms listed above.

Nervous system problems

  • Nervous system changes are rare, but can be serious.
  • You may get: 
    • headaches
    • fever
    • stiff neck
    • confusion or difficulty concentrating
    • dizziness or drowsiness
    • loss of consciousness
    • muscle weakness or pain
    • numbness or tingling in your hands or feet
    • jerky movements.
  • Take your steroid medication as directed by your doctor.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get any of the symptoms listed above.

Eye problems

  • You may get:
    • eye pain
    • itchy eyes
    • red or swollen eyes
    • blurred or change in vision
    • change in colour vision
    • watery or gritty eyes
    • dry eyes
    • sensitivity to light.
  • Protect your eyes from the weather (sun and wind) by wearing sunglasses.
  • Use your eye drops or take your steroid medication as directed by your doctor.
  • Tell your doctor or nurse as soon as possible if you get any of the symptoms listed above.

Hormone problems

  • Hormone changes are infrequent, but can be serious.
  • You may get:
    • headaches
    • tiredness, dizziness or fainting
    • abnormal heartbeat (faster than usual)
    • a feeling of being hot or cold more easily
    • excessive sweating
    • weight changes 
    • a deepened voice
    • irregular or absent periods
    • nausea and vomiting
    • thirsty and need to urinate more often than normal
    • high blood sugar levels and increased risk of diabetes (requiring insulin therapy)
    • pain in your stomach area
    • muscle pain or weakness
    • difficulty sleeping
    • agitated more easily
    • changes in your mood or behaviour, such as decreased sex drive or irritability.
  • Take your hormone or steroid medication as directed by your doctor.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you feel confused, weak, dizzy, or faint, or get sudden pain in your lower back or legs.

Lung problems

  • You may get:
    • shortness of breath
    • difficulty breathing
    • faster heartbeat than normal
    •  chest pain
    • new or worsening cough
    • fever.
  • Your doctor will monitor how well your lungs are working during your treatment.
  • Take your steroid medication as directed by your doctor.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have chest pain or become short of breath.

Kidney damage

  • This treatment can cause changes to how your kidneys work.
  • You may get: 
    • a feeling of needing to urinate less often than normal
    • blood in your urine
    • swollen hands and feet
    •  loss of appetite.
  • You will have regular blood tests to check how well your kidneys are working.
  • You may need to drink more fluids while you are having treatment. Your doctor or nurse will tell you if you need to do this.
  • Take your steroid medication as directed by your doctor.
  • Tell your doctor or nurse as soon as possible if you notice that your urine changes colour or you don't need to empty your bladder as often.

Skin rash

  • You may get
    • a red rash
    • a bumpy rash 
    • dry and itchy skin 
    • skin peeling or blisters. 
    • if you have had previous radiation therapy to an area this effect may be worse 
  • Moisturise your skin with a gentle non-perfumed moisturising cream like sorbolene or aqueous cream.
  • Avoid scratching your skin.
  • Avoid wearing tight fitting clothing
  • Protect your skin from the sun by wearing sun-protective clothing, a wide-brimmed hat, sunglasses and sunscreen of SPF 50 or higher.
  • Take your antihistamine medication or apply your steroid cream as directed by your doctor.
  • Tell your doctor or nurse as soon as possible if you notice any changes to the rash like pain or pus forming.

Thyroid problems

Thyroid problems are common with this treatment. The most common problem is an underactive thyroid gland (hypothyroidism), occasionally you may get an overactive thyroid gland (hyperthyroidism).

  • If you have an underactive thyroid, you may get:
    • fatigue and low energy levels
    • depression
    • slow heart rate
    • unexplained weight gain
    • intolerance to cold temperatures
    • fatigued and aching muscles
    • dry, coarse skin
    • puffy face
    • hair loss
    • constipation
    • problems with concentration
    • changes in your periods
  • If you have an overactive thyroid, you may get
    • abnormal heartbeat (faster than usual)
    • a feeling of being hot or cold more easily
    • excessive sweating
    • difficulty sleeping
    • anxiety, nervousness or agitated more easily
    • diarrhoea
    • changes in your periods
  • You will have regular blood tests to check how well your thyroid is working.
  • Take your hormone or steroid medication as directed by your doctor.
  • Tell your doctor or nurse if you get any of the symptoms listed above.

Non-immune related side effects

Appetite loss (anorexia)

  • You may not feel like eating.
  • Try to avoid drinking fluids at meal times.
  • Try to eat small meals or snacks regularly throughout the day.
  • Try to eat food that is high in protein and calories.
  • If you are worried about how much food you can eat, or if you are losing weight, ask to speak to a dietitian.

Tiredness and lack of energy (fatigue)

  • You may feel very tired, have no energy, sleep a lot, and not be able to do normal activities or things you enjoy.
  • Do not drive or operate machinery if you are feeling tired.
  • Nap for short periods (only 1 hour at a time)
  • Prioritise your tasks to ensure the best use of your energy.
  • Eat a well balanced diet and drink plenty of fluids (unless you are fluid restricted).
  • Try some gentle exercise daily.
  • Allow your friends and family to help.
  • Tell your doctor or nurse if you get any of the symptoms listed above.

Headache

  • You can take paracetamol if you have a headache.
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you get a very bad headache that is not helped by pain medication.

Nausea and vomiting

  • You may feel sick (nausea) or be sick (vomit).
  • Drink plenty of fluids (unless you are fluid restricted).
  • Eat small meals more frequently.
  • Try food that does not require much preparation.
  • Try bland foods like dry biscuits or toast.
  • Gentle exercise may help with nausea.
  • Anti-sickness medication is usually not needed but may help in some people.
  • Ask your doctor or nurse for eviQ patient information - Nausea and vomiting during cancer treatment. 
  • Tell your doctor or nurse immediately, or go to the nearest hospital Emergency Department if you have uncontrolled vomiting or feel dizzy or light-headed.

Blood clot risk

  • Cancer and anticancer drugs can increase the risk of a blood clot (thrombosis).
  • Tell your doctor if you have a family history of blood clots.
  • A blood clot can cause pain, redness, swelling in your arms or legs, shortness of breath or chest pain.
  • If you have any of these symptoms go to your nearest hospital Emergency Department.

Medications and vaccinations 

  • Before you start treatment, tell your doctor and pharmacist about any medications you are taking, including over-the-counter products, vitamins or herbal treatments. 
  • Don’t stop or start any medications during treatment without talking to your doctor and pharmacist first.
  • Paracetamol is safe to take if you have a headache or other mild aches and pains. It is recommended that you avoid taking aspirin, ibuprofen and other anti-inflammatory type medications for pain while you are having treatment. However, if these medications have been prescribed by your doctor, do not stop taking them without speaking with your doctor.
  • Do not have any vaccinations without discussing with the doctor who is managing your cancer treatment.
  • People you live with should be fully vaccinated, according to the current vaccination schedule. Extra care needs to be taken with hand washing and careful disposal of soiled nappies for infants who have recently received the rotavirus vaccine.

Other medical and dental treatment

  • If you go to hospital or any other medical appointment (including dental appointments), always tell the person treating you that you are receiving anticancer drugs.
  • Before you have any dental treatment, talk to your doctor. 

Diet 

  • While you are receiving this treatment it is important that you try to maintain a healthy diet.
  • Speak to your doctor or nurse about whether drinking alcohol is safe with your treatment.
  • If you have any concerns about recent weight loss or weight gain or questions about your diet, ask to speak to a dietitian.
  • Avoid drinking or cooking with untreated water (e.g. water from rainwater tanks, bores or rivers) due to risk of contamination. If you intend to drink or cook with rainwater, you should bring it to a boil and allow the water to cool down before drinking or cooking with it. For more information see the NSW Health - Rainwater tanks opens in a new tab or window webpage.

Fertility

  • Some cancer treatments can reduce your fertility. This can make it difficult or impossible to get pregnant or father a child.
  • Talk to your doctor or nurse before you start any treatment. Depending on your situation there may be fertility sparing options available to you and/or your partner, discuss these with your doctor or nurse. 

Pregnancy and breastfeeding 

  • Some cancer treatments can be dangerous to unborn babies. Talk to your doctor or nurse if you think there is any chance that you could be pregnant.
  • Do not try to get pregnant or father a child during this treatment. Contraception should be used during treatment and after stopping treatment. Ask your doctor or nurse about what type of contraception you should use.
  • If you are planning pregnancy/fatherhood after completing this treatment, talk to your doctor. Some doctors advise waiting between 6 months and 2 years after treatment.
  • Do not breastfeed if you are on this treatment, as anti-cancer medications can also pass into breast milk.

Sex life and sexuality 

  • The desire to have sex may decrease as a result of this treatment or its side effects. 
  • Your emotions and the way you feel about yourself may also be affected by this treatment. 
  • It may help to discuss your concerns with your partner and doctor or nurse.

Quitting smoking

  • It is never too late to quit smoking. Quitting smoking is one of the best things you can do to help your treatment work better.
  • There are many effective tools to improve your chances of quitting.
  • Talk to your treating team for more information and referral to a smoking cessation support service.

Staying active

  • Research shows that exercise, no matter how small, has many benefits for people during and after cancer treatment.
  • Talk to your doctor before starting an exercise program. Your doctor can advise whether you need a modified exercise program.

For more information about cancer treatment, side effects and side effect management see our Patient and carers section. 

Telephone support

  • Call Cancer Council on 13 11 20 for cancer information and support

Melanoma information

General cancer information and support

Quit smoking information and support

Quitting smoking is helpful even after you have been diagnosed with cancer. The following resources provide useful information and support to help you quit smoking. Talk to your treating team about any other questions you may have.

Telephone support

  • Call Cancer Council on 13 11 20 for cancer information and support

Kidney cancer information

General cancer information and support

Quit smoking information and support

Quitting smoking is helpful even after you have been diagnosed with cancer. The following resources provide useful information and support to help you quit smoking. Talk to your treating team about any other questions you may have.

This document is a guide only and cannot cover every possible situation. Your treating team will consider your individual situation when making decisions about your care. Contact your doctor, nurse, pharmacist, or radiation therapist if you have any questions or concerns about your treatment, or you are having problems coping with side effects. While eviQ aims to provide reliable information, eviQ and the Cancer Institute NSW do not endorse or accept responsibility for the accuracy, currency, reliability or correctness of the content of linked external information sources. Use of this document is subject to eviQ’s disclaimer available at www.eviQ.org.au

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The currency of this information is guaranteed only up until the date of printing, for any updates please check:

https://www.eviq.org.au/pi/3677

21 Apr 2025