Lessons on Talking to Your Oncologist About Cancer Immunotherapy

On June 19, Ariella Chivil and her oncologist, Alexander M. Lesokhin, MD, of Memorial Sloan Kettering Cancer Center (MSK) reunited for a special Cancer Immunotherapy Month webinar and discussed the necessity of trust and communication throughout the immunotherapy clinical trial in which Ariella participated over five years ago.

Ariella was diagnosed with Hodgkin lymphoma in 2010, just before her junior year of college. Over the course of four years, she discovered her cancer was resistant to all available treatments; she went through 14 different protocols, each with debilitating side effects. She was recovering from her last chemotherapy treatment when she first met Dr. Lesokhin to learn about a new early phase clinical trial of nivolumab (Opdivo®).

Dr. Lesokhin immediately put her at ease by listening, not over-promising, and inviting her to make informed choices. Trust shaped their doctor-patient relationship and allowed Ariella to feel empowered throughout her treatment. She reflected, “[Dr. Lesokhin] met me where I was on my sickest days, on my healthiest days, on my saddest days and on my happiest days, and I think that’s how we were really able to develop such a strong relationship… I could be myself and share [my] experience.”

This feeling extended to the entire healthcare team at MSK, from the nurse who walked Ariella through the informed consent process for the trial, to staff who greeted her as she came in for treatment. “I really appreciated the warm comforting vibe that Dr. Lesokhin’s team put out there because I definitely needed it after the whirlwind I had been through,” she explained. Dr. Lesokhin emphasized, “It needs to be the patient’s decision what to do next.”

Ariella decided to enroll in the nivolumab clinical trial, becoming one of the first patients with Hodgkin lymphoma to receive this treatment. She explained, “it’s an opportunity to help your own immune system do the job it’s supposed to do.”

Her first scans after beginning the treatment showed a distinct reduction in her tumors. Ariella appreciated that Dr. Lesokhin didn’t overhype the initial success of the treatment. At this point, she was weary of the false promises of initial successes from her past treatments and appreciated his candor.  

Dr. Lesokhin’s collaborative approach continued throughout treatment. Ariella advises, “it’s really important to make sure that when you do select a clinical trial or select a drug that you also are selecting the right care team for you so that you can feel comfortable communicating your symptoms with them. The sooner that you can address something, the better.” She also stressed the importance of advocating for yourself throughout treatment, stating, “you are an expert in your own life and your own health.”

Dr. Lesokhin reflected that, over time, when it became apparent Ariella had a durable response to treatment, “it was one of those remarkable kinds of experiences that you always hope for when you’re testing new drugs and in early studies.”

Ariella’s participation in this trial has, in part, made nivolumab accessible to other patients. “You’re helping to move science forward,” she explained. In the past five years, nivolumab has gained U.S. Food and Drug Administration (FDA) approvals for the treatment of melanoma, lung cancer, kidney cancer, head and neck cancers, Hodgkin lymphoma, bladder cancer, colorectal cancer, and liver cancer. Dr. Lesokhin noted that 65-70% of patients with Hodgkin lymphoma respond to nivolumab and other PD-1 blockade drugs.

Today, Ariella is off treatment and enjoying living and working in New York City. You can read more about her story on her CRI ImmunoAdvocate profile or follow her on Twitter @cruella_chivil.

Photo by Daniel Peters on Unsplash