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How immunotherapy is given
Checkpoint immunotherapy is usually given directly into a vein through an intravenous drip. Sometimes two checkpoint inhibitor drugs are given together, or a checkpoint inhibitor drug is given with a chemotherapy or targeted therapy drug.
You will usually have checkpoint immunotherapy as an outpatient, which means you visit the hospital or treatment centre for the day. You may have treatment every 2–4 weeks in a repeating cycle.
How often and how long you have the treatment depends on the type of cancer and how advanced it is; the type of checkpoint inhibitor/s; how you respond to treatment; and what side effects, if any, you experience. Many people stay on immunotherapy for up to two years, but clinical trials are now testing if the treatment can be given for a shorter period of time once it has started working or whether ongoing treatment is necessary.
Because immunotherapy drugs act directly on the body’s own immune system, how long they keep working will vary from person to person. Sometimes, they keep working long after treatment stops.
Checkpoint immunotherapy can cause side effects anywhere in the body. These are different to the side effects of other cancer treatments and need to be managed differently. The side effects of immunotherapy are sometimes called immune-related adverse effects (IRAEs).
You may have side effects within days of starting treatment, but more commonly they occur many weeks or months after starting treatment. In some rare cases, new side effects can appear months after treatment.
Let your treatment team know about any over-the-counter medicines or natural therapies you are thinking about using. Some may affect how the immunotherapy works or make side effects worse.
Common and rare side effects of immunotherapy
Immunotherapy can cause inflammation, which may lead to different side effects depending on which part of the body becomes inflamed. The side effects you might experience will depend on the type of immunotherapy you receive and how your body responds. Most people have mild side effects. Side effects are likely to be more severe if you are taking a combination of immunotherapy drugs or having immunotherapy with other cancer treatments.
Common side effects
Fatigue – tiredness that does not go away with rest, caused by inflammation throughout your body
Changes in weight and temperature – could be inflammation causing the thyroid to work too fast (hyperthyroidism, leading to weight loss and feeling warm) or too slow (hypothyroidism, leading to weight gain and feeling cold)
Skin rash and itching – could be dermatitis, which makes skin red, bumpy and itchy
Diarrhoea, abdominal pain and bloating – could be inflammation of the bowel (colitis), less commonly may lead to bloody stools
Pain in the joints – could be inflammation of the joints (arthralgia), especially if you already have arthritis or a similar condition
Rare side effects
Headache, change in vision – could be inflammation of the pituitary gland (hypophysitis) or the membranes around the brain and spinal cord (meningitis)
Dry eyes – could be inflammation of the eyes or tear glands
Breathlessness and coughing – could be inflammation of the lungs
Yellowing of the eyes, severe abdominal pain and dark urine – could be inflammation of the liver (hepatitis)
Excessive thirst or urination – could be inflammation of the pancreas affecting the production of insulin
Muscle pain – could be inflammation of the muscles (myositis)
Other rare side effects can occur. Let your treatment team know about any new or worsening side effects during or after treatment. Do not try to treat side effects yourself. Most immunotherapy side effects can be managed and reversed if they are reported early.
Because immunotherapy works differently from other cancer treatments, it’s important to work closely with your treatment team to monitor your response.
Before starting immunotherapy, discuss the potential side effects with your cancer specialist. They can give you a Consumer Medicine Information leaflet about the immunotherapy drug that you are having. Ask which side effects to watch out for or report, and who to contact after hours. Throughout treatment, the team will regularly test your blood and ask you questions to check for early signs of side effects.
Because new side effects can appear months after having immunotherapy, ask your cancer specialist how long you need to look out for side effects.
Reporting side effects
Side effects can be better managed if reported early, so it is important to let your cancer care team know about new or worsening symptoms, even if they seem minor or you’re not sure if they are related to your treatment. If left untreated, side effects can become serious and may even be life-threatening.
Because immunotherapy is still a new cancer treatment, general practitioners (GPs) and other health professionals may not yet be familiar with the side effects. Your team may give you a card with information about your immunotherapy treatment and potential side effects. You can give this card to any other health professionals you see and ask them to consult with your cancer specialist. Do not start any new medicines, including anti-inflammatory steroids, until your cancer specialist has been consulted. If you become unwell, even years later, it is important to tell any health professionals you see that you have had immunotherapy.
Treating side effects
Side effects will be graded on a scale of 1–4 to help decide how to treat them. Moderate to severe side effects (grades 2–4) are often treated with steroid tablets, such as prednisone. In some cases of severe side effects (grades 3–4), people may be hospitalised and/or treated with intravenous steroids or other medicines, and immunotherapy may need to be stopped until the side effects are better controlled.
If side effects become too severe, immunotherapy must be stopped permanently. In this case, the immunotherapy that you have already received may have “trained” the immune system to recognise cancer cells, so you may continue to benefit.
Although there is a risk of severe side effects, it may be reassuring to know that many people experience only mild side effects.
Understanding ImmunotherapyDownload resource
This information is reviewed by
This information was last reviewed July 2019 by the following expert content reviewers: A/Prof Brett Hughes, Senior Staff Specialist, Medical Oncology, Royal Brisbane and Women’s Hospital and The Prince Charles Hospital, and Associate Professor, The University of Queensland, QLD; Dawn Bedwell, 13 11 20 Consultant, Cancer Council Queensland, QLD; Tamara Dawson, Consumer; A/Prof Craig Gedye, Senior Staff Specialist, Medical Oncology, Calvary Mater Newcastle, and Conjoint Associate Professor, School of Medicine and Public Health, University of Newcastle, NSW; A/Prof Alexander Menzies, Medical Oncologist, Associate Professor of Melanoma Medical Oncology, and Faculty Member, Melanoma Institute Australia, The University of Sydney, Royal North Shore Hospital and Mater Hospital, NSW; Dr Donna Milne, Nurse Consultant Melanoma and Skin Service, Peter MacCallum Cancer Centre, VIC; Dr Geoffrey Peters, Staff Specialist, Medical Oncology, Canberra Hospital and Health Services, and Clinical Lecturer, Australian National University, ACT.