Managing side effects of immunotherapy

Side effects of checkpoint inhibitors

Like all treatments, checkpoint inhibitors can cause side effects. These are sometimes called immune-related adverse events (irAEs).

Checkpoint inhibitor side effects are different to the side effects of other cancer treatments and need to be managed differently.

Checkpoint inhibitors trigger an immune response that can lead to redness, swelling or pain (inflammation) anywhere in the body. The diagram below shows examples of common and rare side effects. You are unlikely to have all of the side effects shown. The side effects you have will depend on the drug and how your body responds. While some people have serious side effects, others have just 1-2 mild issues. Although there are many possible side effects linked to checkpoint inhibitors, it’s uncommon to get more than a few.

When to expect side effects

You may have side effects within days of starting treatment, but more commonly they occur several weeks or months after starting treatment. In rare cases, new side effects can appear months after finishing treatment.

Most people have mild side effects. Side effects are likely to be more severe if you are having higher doses or a combination of checkpoint inhibitor drugs, or if you are having immunotherapy with other cancer treatments.

Immunotherapy treatment involved adapting to new drugs and managing side effects with my oncology team.

Jason

Managing side effects

Because checkpoint inhibitors work 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 checkpoint inhibitors, discuss the potential side effects with your cancer specialist. Ask about the side effects that should be reported, who to report them to, and who to contact after hours. You can find out more about the side effects of specific checkpoint inhibitors at eviQ.

You will usually have some tests to check that you are well enough to have immunotherapy before treatment begins. Throughout treatment, you will have regular blood tests, and the team will 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. It’s important to let your cancer treatment 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. Ask your cancer treatment team about this.

Because checkpoint inhibitor therapy is a newer cancer treatment, some health professionals, including general practitioners (GPs), may not yet be familiar with the side effects. Your team may give you a card with information about your 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 probiotics, steroids, herbal therapies, or over-the-counter medicines, until you talk to your cancer specialist. 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

Your doctor will talk to you about how to manage mild to moderate side effects. For example, you may be given a moisturising cream to treat a skin rash. Moderate to severe side effects are often managed by pausing the checkpoint inhibitor and starting on steroid tablets, such as prednisolone.

In some cases, checkpoint inhibitors may be stopped until the side effects are better controlled. You may need to stay in hospital and/or have intravenous steroids or other medicines.

If side effects become severe, you may have to stop checkpoint inhibitor therapy permanently. Even so, you may continue to benefit from the therapy that you have already received because it may have “trained” your immune system to recognise cancer cells.

Although there is a risk of severe side effects, many people experience only mild side effects.