ImmunoAdvocates Laurie Adami Lymphoma Laurie’s Story In 2006, I was 46 years old and the president of a financial software company when out of left field, I was diagnosed with stage 4 incurable follicular non-Hodgkin lymphoma. At the time, there was just one approved cancer treatment, R-CHOP, which is a combination of a monoclonal antibody with chemotherapy agents. Unfortunately, my remission was short lived and I relapsed at my three-month post-treatment scan. I sought out my first clinical trial at that point, an HDAC inhibitor called Vorinostat. Between 2006 through 2018, I was in continual treatment. Fortunately I lived in Los Angeles, which offered me numerous large cancer research facilities. By July 2018, I had exhausted all of my treatment options. I was running out of time. I managed to get into a phase 2 clinical trial of CAR T cell therapy (Yescarta) at UCLA. I was the first patient at UCLA to enroll in the trail. CAR T was my seventh therapy in 12 years (my other therapies were R-CHOP, Vorinostat in phase 2 trial, R-Bendamustine; Bexxar RIT, Cal101 (Zydelig/Idelalisib) phase 1 trial; and obinutuzumab). Prior to my CAR T cell therapy, I had very bulky tumors which we had unsuccessfully attempted to debulk. My oncologist at UCLA, Dr. Sven de Vos, estimated I had over 8 pounds of tumor burden when I checked in for treatment. Likely as a result of my tumor burden, I experienced grade 4 cytokine release syndrome in addition to neurotoxicity which resulted in my being placed in a medically induced coma. But UCLA took great care of me and I survived. On day 30 scans showed that my lymphoma was finally in complete remission. I am now three years, cancer free. Questions and Answers How and when did you first learn you had cancer? On Good Friday (ha!) 2006, I learned that I had cancer from my internist. How did you learn about immunotherapy and why did you decide to do it? I first learned about CAR T cell therapy at a Leukemia & Lymphoma Society event in 2012. They shared information regarding the work being done at the University of Pennsylvania and the University of California, Los Angeles, and about the dramatic results they were seeing in initial studies. The initial CAR T cell trials were being done for more aggressive blood cancers, acute lymphoblastic leukemia and diffuse large B-cell lymphoma. CAR T was in very early stages for my diagnosis, follicular non Hodgkin lymphoma. Follicular is the second most commonly diagnosed non-Hodgkin lymphoma after diffuse large B-cell lymphoma, and is considered to be a less aggressive form of non-Hodgkin lymphoma. Unfortunately my follicular was very aggressive and refractory to therapy. I had already had six treatments by 2018 so CAR T was really my only option as risky as it was given the bulkiness of my disease. If I hadn’t done CAR T when I did, I have no doubt I wouldn’t be alive today, What was treatment like? Did you have any side effects? Due likely to the bulkiness of my disease, I experienced grade 4 cytokine release syndrome. In addition I experienced neurotoxicity (mental confusion, hallucinations and brain seizures) that required me being placed in a medically induced coma for several days, How did immunotherapy compare to other treatments you may have received, if any? Unlike most other treatments I had, CAR T was a one shot deal, one and done. In addition, CAR T was the first therapy I received that utilized my own immune cells to enable a much more targeted approach. My first six therapies were off-the-shelf pills or infusions not customized to my own genetics. As a result, the side effects I experienced were limited to inflammatory responses to my receipt if my modified CAR T cells. Side effects to my first six therapies were much broader and some were ongoing even years after I stopped the treatments. Are there things that surprise you about the cancer experience? I benefited greatly from the doctors, researchers, nurses, and technicians who have dedicated their lives to helping people like me. I feel like I was surrounded by a team of angels. My 12-year cancer experience opened my eyes to the beauty that is regular daily life. I took so much for granted before. My son was only in kindergarten when I was diagnosed, and one of the first doctors I consulted with told me I had a 50% chance that I would be alive in two years. That was not acceptable to me that my son could lose me when he was in the second grade, so I was determined to do whatever I could to stay alive. What would you want another patient to know about immunotherapy or about participating in a clinical trial? Clinical trials saved my life and bought me lots of time for CAR T to develop to the point that I could get it. Of the seven treatments I had in my 12-year cancer journey, three were clinical trials, and three had been FDA approved within a year of when I got them. Clinical trials typically offer much more targeted therapies, which in my opinion, made so much more sense than the brute force, kill-every-cell chemotherapy, I felt much more closely followed by my care team when I was in the clinical trials, with frequent follow-up at every step of the way.
