Managing side effects

Because immunotherapy works differently from other cancer treatments, it’s important to work closely with your treatment team to monitor any side effects and how the cancer responds.

Before starting immunotherapy with a checkpoint inhibitor, discuss the potential side effects with your cancer specialist. Ask which side effects to watch out for or report, who to report them to, and who to contact after hours. You can read about the side effects of specific checkpoint inhibitors at eviq.org.au.

Before treatment begins, you will usually have some tests to check that you are well enough to have immunotherapy. Throughout treatment, the team will regularly test your blood and ask you questions to check for early signs of side effects. New side effects can appear months after having immunotherapy, so ask your cancer specialist how long you need to keep watching 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.

Sometimes it can be tricky to know whether your symptoms are related to the cancer or the treatment. Make sure to discuss this with your cancer care team.

Because immunotherapy is a newer 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 show this card to other health professionals you see and ask them to consult with your cancer specialist. Do not start any new medicines, including anti-inflammatory steroids, herbal therapies or over-the-counter medicines, until your cancer specialist has been consulted. If you become unwell, even years later, it is important to tell any health professional you see that you have had immunotherapy.

Treating side effects

Side effects are graded on a scale of 1–4.

• Grades 1–2: Your doctor will tell you how to manage mild to moderate side effects (grades 1–2). For example, you may be given a moisturising cream to treat a skin rash.
• Grades 2–4: Moderate to severe side effects (grades 2–4) are often treated with steroid tablets, such as prednisolone. In some cases of severe side effects (grades 3–4), people may need to stay in hospital and/or have intravenous steroids or other medicines, and immunotherapy may be stopped until the side effects are better controlled.

If side effects become too severe, you may have to stop immunotherapy permanently. In this case, the immunotherapy that you have already received may have “trained” your 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.