If immunotherapy with checkpoint inhibitors is part of your treatment plan, you are likely to have many questions. In this section, we discuss some common concerns.
Find the answers to these questions:
- Is immunotherapy right for me?
- How do I get immunotherapy?
- Will immunotherapy work?
- How long will it take to work?
- How will I feel?
- How much will it cost?
- How is immunotherapy given?
- What if I have an autoimmune disease?
- What if I have had an organ transplant?
- What side effects will I have?
- How will I know whether immunotherapy is working?
Is immunotherapy right for me?
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.
How do I get immunotherapy?
To access immunotherapy, talk to your cancer specialist. Ask if any checkpoint inhibitors would be a suitable treatment for you and whether they are reimbursed through the PBS for your type of cancer.
It may be possible to have immunotherapy treatments through clinical trials. Speak with your treatment team for more information.
For more on this, see Clinical trials and research.
Will immunotherapy work?
Some media reports have claimed that checkpoint inhibitors are “miracle drugs” that can cure cancer. This means that people often have very high expectations when starting immunotherapy, or they may be confused and upset if they aren’t offered it.
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.
How long will it take to work?
Like most other 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.
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.
How will I feel?
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.
How much will it cost?
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.
How is immunotherapy given?
Checkpoint inhibitors are usually prescribed by a medical oncologist or haematologist. They are given as a liquid through a drip inserted into a vein (intravenous infusion). Sometimes two or more drugs may be given together, such as two checkpoint inhibitors, or a checkpoint inhibitor with one or two chemotherapy drugs or a targeted therapy drug.
You will usually have immunotherapy as an outpatient, which means you visit the hospital or treatment centre for the infusion and then go home again. Checkpoint inhibitors are commonly given in repeating cycles, with rest periods of 2–6 weeks in between.
How often and how long you have the treatment depends on:
- the type of cancer and how advanced it is
- the type of checkpoint inhibitor
- how the cancer responds to the treatment
- what side effects you experience.
Many people stay on immunotherapy for up to two years. Clinical trials are now testing if the treatment can be given for a shorter period of time once it has started working or whether ongoing treatment is needed.
Checkpoint inhibitors can take weeks or months to start working, depending on how your immune system and the cancer respond. Sometimes they keep working long after treatment stops, but this varies from person to person.
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 Cancer Treatments Online. Your specialist may need to tailor the protocols to your individual situation.
Like many other cancer treatments, immunotherapy 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.
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 and 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 immunotherapy 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 immunotherapy.
What side effects will I have?
Read about common side effects and how they are managed.
How will I know whether immunotherapy is working?
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.
What if immunotherapy 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.
More resources
This information was reviewed by: Dr Jenny Lee, Medical Oncologist, Chris O’Brien Lifehouse, NSW; Prof Michael Boyer, Medical Oncologist and Chief Clinical Officer, Lung and Thoracic Cancer, Chris O’Brien Lifehouse, and Central Clinical School, The University of Sydney, NSW; A/Prof Christine Carrington, Senior Consultant Pharmacist Cancer Services, Princess Alexandra Hospital, QLD; Dr Inês Pires da Silva, Medical Oncology Fellow, Melanoma Institute Australia and Westmead and Blacktown hospitals, NSW; Sandra Donaldson, 13 11 20 Consultant, Cancer Council WA; Sherry Gilbert, Consumer; Marilyn Nelson, Consumer; Julie Teraci, Skin and Melanoma Cancer Nurse Coordinator, WA Cancer and Palliative Care Network, North Metropolitan Health Service, WA; Helen Westman, Lung Cancer Nurse Coordinator, Cancer and Palliative Care Network, Royal North Shore Hospital, NSW.
View the Cancer Council NSW editorial policy.
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