By Carole Seigel
Patient Representative, ASCO Management of Immune-Mediated Side Effects Expert Panel
Immunotherapy is a new, exciting, and hopeful development in the field of cancer treatment for patients and families. We, the lay public, are somewhat familiar with the benefits of our body’s immune system. Those of us of a certain age can remember, as children, being told that one of our young friends was ill with measles, mumps, or chicken pox and we might soon catch it, but then we would never have to worry about it again. It did sound like a miracle. Folks are familiar with the benefits of a healthy immune system, so it falls into place that patients are willing, perhaps even eager, to accept this innovation, whether alone or along with more traditional cancer treatment options.
However, immunotherapy presents a new challenge in terms of side effects and symptom control. When the immune system is activated, the impact can be broad on multiple organ systems, including but not limited to the skin, gastrointestinal tract, lungs, and endocrine system. Most side effects are mild, but can be moderate to severe, and fatal reactions have been reported. Also, the symptoms can appear long after treatment has ended. Symptoms that are recognized as being related to the immunotherapy and are monitored and treated early are most likely to be more successfully handled. However, patients and families need to be educated and supported in reporting body changes, and that can be a particular challenge if the presentation is delayed. Oncologists need to communicate that symptoms can be broad and appear after treatment has completed when the patient might be seeing their primary care physician for routine care and their oncologist sporadically.
There is a role, even a responsibility, for patient advocates here. Using our voice, individually or through advocacy organizations, the message needs to be that immunotherapy, though the benefits can be great, can produce a wide array of side effects. This is not to alarm patients and families but to arm them with knowledge. Websites can list unintended outcomes. Patients need to know that minor or seemingly unrelated symptoms should be reported early to their health care team. Caregivers can be helpful in reminding patients of this reality of immunotherapy. Being silent, in this case, is not being stoic. Advocacy can be used to inform and educate the primary care providers about the immunotherapy pattern. Advocacy can alert the health care team to be prepared if patients might appear overly cautious in reporting changes in their body.
It is good news that ASCO has published a guideline on immunotherapy adverse effects, which should be helpful in raising awareness about the potential toxicities of this new treatment and guiding decisions regarding treatment. Providers might find it useful to review the ASCO “Patient-Clinician Communication Guideline: Fostering Relationship-Centered Care” as they prepare to have conversations about immunotherapy and its possible side effects.
Patient advocacy can play a pivotal role in ensuring that immunotherapy has a safe and positive place in successful cancer treatment.
Ms. Seigel is a patient advocate at the National Clinical Trials Network and the Massachusetts General Hospital Cancer Center. She has served as a patient representative on ASCO’s Clinical Practice Committee and several clinical practice guideline expert panels, including the recent Immune-Mediated Side Effects Expert Panel.