Karen PetersonBreast Cancer |  Diagnosed 2015

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.

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.

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.

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.

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.

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.