If you are getting immunotherapy with checkpoint inhibitors, you may have many questions. We address some common concerns below. Click on the headings to learn more.
Checkpoint inhibitors work well for some people, but not everyone. They are available in certain situations for some types of cancer, including:
- bladder cancer
- breast cancer
- head and neck cancer
- Hodgkin and non-Hodgkin lymphoma
- kidney cancer
- liver cancer
- lung cancer
- melanoma
- mesothelioma
- Merkel cell carcinoma
- squamous cell carcinoma of the skin.
To work out if checkpoint inhibitor therapy 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 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.
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.
Learn more about clinical trials and research.
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.
If one checkpoint inhibitor drug 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 drug 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.
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 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.
See Emotions and cancer for more on coping with uncertainty.
Checkpoint inhibitors are expensive (often several thousand dollars per dose), but the Australian Government covers most of this cost for some drugs for certain 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.
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.
Who prescribes checkpoint inhibitors
Checkpoint inhibitors are prescribed by a medical oncologist (a doctor who treats cancer with drug therapies) or haematologist (a doctor who treats blood cancers). They are given as a liquid through a drip inserted into a vein (intravenous infusion).
Combining treatments
Sometimes 2 or more drugs may be given together, such as 2 checkpoint inhibitors, or a checkpoint inhibitor with 1–2 chemotherapy drugs or a targeted therapy drug.
Where and how is treatment given?
You will usually have treatment as an outpatient, which means you visit the hospital or treatment centre for the infusion and then go home again. Checkpoint inhibitors are usually given in repeating cycles, with rest periods of 2–6 weeks between cycles.
Treatment duration and frequency
How often and how long you have the treatment depends on the type of cancer, the type of checkpoint inhibitor, how the cancer responds to the treatment, and what side effects you may experience. Many people stay on checkpoint inhibitors for up to 2 years. Clinical trials are underway to test whether ongoing treatment is needed or if checkpoint inhibitor therapy can be given for a shorter period of time once it has started working.
What if the treatment stops working?
If one checkpoint inhibitor drug 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 drug 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.
Treatment protocols and personalisation
Most cancers have treatment protocols that set out which drugs to have, how much and how often. You can find information about protocols for checkpoint inhibitors and other cancer drugs at eviQ, which provides cancer treatment information (visit eviq.org.au). Your specialist may need to tailor the protocols to your individual situation.
Safety considerations
Like many other cancer treatments, checkpoint inhibitor drugs are often not safe to use if you are pregnant or breastfeeding. Ask your doctor for advice about contraception. If you become pregnant, let your medical team know immediately.
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.
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.
Read about common side effects and how they are managed.
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.
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.
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A/Prof Rohit Joshi, Medical Oncologist, Calvary Central Districts Hospital and Lyell McEwin Hospital, and Director, Cancer Research, SA; Rebecca Blackwood and Meiling Zhou, Nurse Consultants, Head and Neck Cancer Service, Peter MacCallum Cancer Centre, VIC; James Cormack, Consumer; Prof Simon Harrison, Director, Centre of Excellence in Cellular Immunotherapy and Haematologist, Peter MacCallum Cancer Centre, Royal Melbourne Hospital and Melbourne University, VIC; Dr Jia (Jenny) Liu, Medical Oncologist, The Kinghorn Cancer Centre, St Vincent’s Hospital and Senior Research Officer, Garvan Institute and ProCan Children’s Medical Research Institute, NSW; Angelica Miller, Melanoma Community Support Nurse, Melanoma Institute Australia, WA; Kate Moore, 13 11 20 Consultant, Cancer Council WA; Jason Sonneman, Consumer.
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