ImmunoAdvocates Ariella Chivil Lymphoma Ariella’s Story Ariella Chivil was diagnosed with Hodgkin lymphoma in 2010, just before her junior year of college. After completing 14 different treatment protocols, each with its own set of side effects and complications, Ariella and her doctors decided to try something new: a clinical trial of the immunotherapy nivolumab (Opdivo®). Her first scans after beginning the trial showed a marked reduction in her tumors. Two years later, Ariella is off treatment and enjoying living and working in New York City. In May 2016, nivolumab received FDA approval for the treatment of Hodgkin lymphoma. Questions and Answers How and when did you first learn you had cancer? When I told the physician my symptoms, she sent me for a chest X-ray. Afterwards, she called me into her office, and delicately told me there was a mass the size of my fist outside of my right lung. I glanced down at my hand and didn’t know how to process the information. I felt completely overwhelmed. Next up was a biopsy, after which I was diagnosed with Hodgkin lymphoma. Hodgkin’s was pitched as “the good one”: typically folks just needed some chemotherapy, maybe some radiation and they were out the door. That was what we all expected – it didn’t quite pan out that way. How did you learn about immunotherapy and why did you decide to do it? By the time I got to the nivolumab trial at Memorial Sloan Kettering Cancer Center, I was fairly underweight due to treatment and disease-related complications that impacted my ability to both keep down and digest food. To give an idea, my normal weight is around 150 – by that time, I was at 120 (and hovering). I can still remember my first discussion with the trials doctors; how I broke down and struggled to keep any degree of composure while they walked me through the protocol. Though I was initially skeptical of this new drug (and grumbled that it was just another drug being tossed in the ring), I was happy to have another chance and trusted their judgement. They explained that it would work differently than others – it targeted an exciting new pathway that they were exploring and had worked well in other cancers. Hearing this track record made me feel better. What was treatment like? Did you have any side effects? I was so used to hearing bad news at that point—every appointment felt like waiting for the other shoe to drop, waiting for something terrible to happen. Needless to say, my expectations were low after so many failed treatments. But all the while, I felt great. I wasn’t experiencing any fatigue from the drug. I wasn’t watching my hair fall out bit by bit. I was able to start eating more and gain muscle mass. But mostly importantly: for the first time in a long time, I was able to start taking care of myself. What would you want another patient to know about immunotherapy or about participating in a clinical trial? I can’t overstate how lucky I am to have been in the exact right place, at the exact right time to get a spot on the nivolumab trial. The idea that this could change the standard of care for people with Hodgkin’s is so exciting to me. I hope that there can be a time when you simply go onto nivolumab, and just live your life. That would be my wish for everyone. It’s just done so much for me.
