ImmunoAdvocates Karen Peterson Breast Cancer Karen’s Story I was initially diagnosed with stage 1 triple-negative breast cancer in 2015. That year I underwent standard treatments including surgery and chemotherapy. I ultimately had a double mastectomy. Throughout the following year, I spent a lot of time researching additional treatment or other treatment options, and talking to experts. I knew there was a strong likelihood the cancer would return. I am single mother, living in Harlem, New York City, and I needed to be prepared. Cancer has affected my family tremendously. My maternal grandmother (44 years old), infant brother (18 months old), and uncle (48 years old), all succumbed to cancer. In 2017 the breast cancer returned, and this time it was metastatic. I was facing a life expectancy of 18 to 24 months. I did not want to undergo chemotherapy again because of the awful side effects, and I wanted to make informed decisions based on science, not emotion or fear. I had previously considered clinical trials, so I searched for and eventually found one at NYU Langone’s Perlmutter Cancer Center. I wasn’t eligible for this trial, but learned about another phase 1 clinical trial led by Dr. Daniel Cho. I became the very first triple-negative breast cancer patient to sign up for the immunotherapy trial in which I participated. After eight weeks of treatment, I underwent my first CT scan which revealed a 72% reduction in tumors! This experience has shown me the importance of patient advocacy and public speaking. I am also a childhood cancer survivor (Wilms tumor) and a major advocate for cancer research. I hope that my advocacy and public speaking will help others learn about immunotherapy. Questions and Answers How and when did you first learn you had cancer? The first time I learned I had cancer in 2015 was on a call with my doctor—a biopsy after an ultrasound (I had dense breast tissue) confirmed a diagnosis of breast cancer. The second time, in 2017, my oncologist was concerned after a routine checkup and blood test. I had a CT scan that revealed several areas of activity. I had a subsequent biopsy of the spine which revealed malignant tumors. How did you learn about immunotherapy and why did you decide to do it? I decided to make informed decisions based on my individual tumor makeup. In 2017, during my second breast cancer diagnosis, I wanted to get a second opinion before deciding to receive chemotherapy again. When I went to that appointment, the oncologist revealed I had a lot of “fighter cells” (tumor-infiltrating lymphocytes) that were trying to attack the tumor. This oncologist recommended genomic testing and suggested I might do well incorporating immunotherapy into my treatment plan. After the genomic report confirmed that my tumor had mutations that may be “driving” my cancer, I decided to aggressively seek out a clinical trial that would only have immunotherapy as the treatment protocol. What was treatment like? Did you have any side effects? My treatment included an infusion every 21 days of two different immunotherapy drugs (a PD-1 checkpoint inhibitor and an IL-2). The combination of these two drugs stimulated my immune system to clear the cancer. The side effects of the IL-2 included peeling of the skin around my eyes and lips. I also experienced severe fatigue, a rash around my chest area, shortness of breath, and severe arthritic pain. How did immunotherapy compare to other treatments you may have received, if any? When I compare my chemotherapy treatment to the immunotherapy treatment I had, the two were vastly different. Chemotherapy robbed me of my hair and weakened my nails. Chemotherapy left me open to infection and a pulmonary embolism. I felt weakened, isolated, unattractive, and battle tested. With immunotherapy I felt fatigued, but then had a wonderful 72-hour recovery, where the symptoms subsided. I was able to keep my hair, get my nails done, eat a healthy diet, dance, travel, and participate in activities. Lastly, immunotherapy has a longer sustained response. In my case, I am a complete responder and have been off the trial for well over a year now. Are there things that surprise you about the cancer experience? The patient perspective is extremely valuable. I had no idea that my experience, successfully completing a phase 1 clinical trial, would help build a completely different career path for me. The importance of self-advocacy and the role it played in obtaining my goal of getting into a clinical trial (after divorcing my original oncology team) gave me renewed confidence. What would you want another patient to know about immunotherapy or about participating in a clinical trial? Immunotherapy is a steadily evolving field, with new clinical trials popping up all the time. As one of the few African-American women to successfully enter and complete a trial, I want other advanced cancer patients to understand that it should be an option that is discussed and considered along with all of the other standard treatments. I truly believe that these conversations should happen very early in advanced cancer diagnoses. Education and seeking out help and resources to navigate information is key. As a patient, trying to understand the science behind immunotherapy and clinical trials can be overwhelming. No one should need to figure this out alone.
