Common questions about immunotherapy

Immunotherapy using checkpoint inhibitors has worked well for some people, but it does not help everyone. It is available for some types of cancer, including bladder cancer, head and neck cancer, Hodgkin and non-Hodgkin lymphoma, kidney cancer, liver cancer, lung cancer, melanoma and Merkel cell carcinoma.

So far, most people who have been treated with checkpoint inhibitors have had advanced cancer. Advanced cancer means either the cancer has come back and spread after the initial treatment, or it was at an advanced stage when first diagnosed. For some cancer types, such as melanoma, immunotherapy is starting to become available for earlier-stage cancers.

To work out if immunotherapy is an option for you, your cancer specialist will consider the type and stage of cancer, your treatment history, your future treatment options and your overall health.

Even if immunotherapy is recommended as a treatment, it is difficult to predict whether it will work. The rate of success varies greatly depending on the type of cancer and many individual factors. You can ask your specialist how successful the treatment has been for people with the same type of cancer as you.

The most challenging issue is that checkpoint inhibitors don’t work for everyone. If you are thinking about trying immunotherapy, ask your specialist how likely the cancer is to respond to the treatment and what other treatments are available. To make immunotherapy available to more people in the future, researchers are trying to understand why some people’s cancers respond better than others.

Like most other cancer treatments, immunotherapy usually takes a while to work, so you and your family may experience anxiety waiting to see whether you’ll respond to the treatment. If it does work, you may worry about how long immunotherapy will control the cancer or whether the cancer will come back.

You may feel it is hard to make plans about work, relationships and travel. Many people find comfort in everyday activities; others focus on doing things they’ve always wanted to do. Let your cancer nurse or specialist know how you’re feeling. They may connect you with a psychologist who can help you work through your thoughts.

Download our booklet ‘Emotions and Cancer’

Checkpoint inhibitors are expensive (often several thousand dollars per dose), but the Australian Government covers most of this cost for some drugs for some types of cancer through the Pharmaceutical Benefits Scheme (PBS). Other cancer types and new drugs may be added to the PBS in the future. Your specialist can give you the latest information about which drugs are on the PBS. 

What if it’s not on the PBS? – You may be able to get checkpoint inhibitors through clinical trials or, sometimes, through a compassionate access program or cost-share program offered by the pharmaceutical company. Some people choose to pay the entire cost themselves, but this can involve major financial decisions.

Before deciding to pay for any cancer treatment, it is important to fully understand the total cost, as well as the likely rates of success and the possible risks and benefits of the treatment. Take the time to discuss these questions with your cancer specialist and your family or close friends.

You will have regular check-ups with your cancer specialist, blood tests and different types of scans to check whether the cancer has responded to the treatment. It may take some time to know if immunotherapy has worked because people often have a delayed response. In some cases, the cancer may appear to get worse before improving.

You may wonder whether having side effects means the immunotherapy is working. Side effects are a sign that the treatment is affecting your immune system in some way, but this may or may not mean the treatment is affecting the cancer. Many people with mild side effects have still seen improvements.

A good response from immunotherapy will make the cancer shrink or disappear. In some cases, the cancer remains stable, which means it does not  grow but also does not shrink or disappear. People with stable disease often continue to have a good quality of life.

Unfortunately, checkpoint inhibitors do not work for everyone. Some cancers will not respond to the treatment at all, or the cancer cells can become resistant to the treatment even if it works at first. This can be very disappointing, but your cancer specialist will help you explore other treatment options if this happens.

If immunotherapy doesn’t work or stops working, ask your cancer specialist about your other treatment options. You may be able to try another type of checkpoint inhibitor or join a clinical trial. A clinical trial is a research study that tests new or modified treatments to see if they are better than current approaches.

Download our booklet ‘Understanding Clinical Trials and Research’