Common questions about immunotherapy

Is checkpoint inhibitor therapy right for me?

Checkpoint inhibitors can be used for many types of cancer. Some checkpoint inhibitors are now available for any type of advanced cancer suitable for this treatment. Checkpoint inhibitors are also available in certain situations for some early-stage cancers, including lung and breast cancer.

Checkpoint inhibitors work well for some people, but not for everyone. To work out if checkpoint inhibitor therapy is an option for you, your cancer specialist will consider the type and stage of cancer, any gene changes or other features in the cancer cells, the available evidence, your treatment history, your future treatment options and your overall health.

Even after all these factors are considered, it is difficult to predict whether checkpoint inhibitor therapy 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.

How do I get checkpoint inhibitors?

Ask your cancer specialist if a checkpoint inhibitor drug would be a suitable treatment for you and whether it is reimbursed through the PBS for your type and stage of cancer.

Checkpoint inhibitors may be available through clinical trials. Ask your treatment team about this.

Will checkpoint inhibitor therapy work?

The most challenging issue is that this type of therapy doesn’t work for everyone. If checkpoint inhibitor therapy is an option for you, ask your specialist how likely the cancer is to respond to the treatment and what other treatments are available. To make checkpoint inhibitor and other immunotherapy available to more people in the future, researchers are trying to understand why some cancers respond better than others.

How will I know whether the checkpoint inhibitor is working?

Like most other cancer treatments, checkpoint inhibitor therapy usually takes a while to work. Depending on how your immune system and the cancer responds, checkpoint inhibitors can take weeks or months to start working. Sometimes they keep working long after treatment stops, but this varies from person to person.

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 checkpoint inhibitor 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.

A good response from checkpoint inhibitors 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.

You and your family may feel anxious while waiting to see whether you’ll respond to the treatment. If it does work, you may worry about how long checkpoint inhibitors 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.

How much will checkpoint inhibitor therapy cost?

Checkpoint inhibitors are expensive (often several thousand dollars per dose). The Australian Government covers most of this cost for some checkpoint inhibitors through the Pharmaceutical Benefits Scheme (PBS). New checkpoint inhibitors 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 the checkpoint inhibitor drug is not on the Pharmaceutical Benefits Scheme?

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 be a major financial decision. 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 this with your cancer specialist and your family or close friends.

What if I have an autoimmune disease?

It is important to tell your cancer specialist if you have an autoimmune disease such as rheumatoid arthritis, lupus, ulcerative colitis or Crohn’s disease. You may still be able to have immunotherapy, but there will be extra issues to consider.

Autoimmune diseases make the body’s immune system overactive so it attacks normal cells, causing redness, swelling and pain (inflammation). The extra immune system activity caused by checkpoint inhibitors can make these symptoms worse.

What if I’ve had an organ transplant?

If you have had an organ transplant, you will probably be taking medicines that suppress the immune system and stop your body from rejecting the new organ. Talk to your specialists, as they will need to carefully balance these medicines with the extra immune system activity caused by checkpoint inhibitors.

What if the checkpoint inhibitor therapy doesn’t work?

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.