Carrie Best: Beating Merkel Cell Carcinoma Thanks to Immunotherapy

Age: 50Plain City, Ohio

In June 2014, I was told that I had about 8 weeks to live and that my only option was an immunotherapy clinical trial. Through this trial, I became the first person with Merkel cell carcinoma to receive avelumab (Bavencio). After just three treatments, the cancer was gone, and today I’m doing great. I’m working and enjoying the simple things in life with my husband and son, laying around in the hammock, riding our bikes, skiing, and generally having fun.

I was diagnosed with cancer in May 2013, just days after my son had turned 6. I had woken up a few days earlier and felt a grape-sized lump in my armpit. Immediately I had thought of breast cancer – my mom had beaten breast cancer several decades earlier and because of that I had been in a breast cancer-surveillance program at The James†. But after several mammograms, ultrasounds, and a biopsy, the nurse practitioner called and told me it wasn’t breast cancer, it was neuroendocrine carcinoma of unknown primary.

I took the call while sitting at a red light on my way to pick up my son from preschool. It took everything I had for me not to fall apart. After getting my son, I went to see my doctor, who is also a close friend, as his office was close by. The nurse took my son to another room, and then I broke down.

My friend had told me, “Carrie this is not good, this is a hardcore, mean cancer.” So, when I saw the oncologist at The James who specialized in neuroendocrine carcinomas I already knew the seriousness of the situation. She told me that the lump in my armpit was a lymph node that was enlarged because the neuroendocrine carcinoma had spread there but she did not know where the original cancer was. She also told me that my chances of survival were less than 15 percent.

After seven cycles of platinum-based chemotherapy, I was cancer free. But just 3 to 4 months later, a scan showed cancer in a lymph node near my kidney. I was treated with everolimus (Afinitor) for 8 weeks, but the cancer spread through the lymph nodes in my pelvis. The chemotherapies I received through a clinical trial also failed to stop the cancer spreading. I knew the situation was dire.

Fortunately, the oncologist running the clinical trial I had been on did a molecular test on a sample of my cancer, and he told me he was 96 percent sure that the primary cancer was Merkel cell carcinoma.

Ever since my diagnosis, I had been educating myself about the latest in cancer research and clinical trials, but this was the piece of information I vitally needed to narrow down my online research. I had already been emailing and speaking to researchers around the world, but this diagnosis made me particularly interested in the idea of immunotherapy.

Just when I hit rock bottom, a response to one of my emails connected me to Dr. Howard Kaufman at the Cancer Institute of New Jersey in New Brunswick, who had just opened a clinical trial, testing avelumab as a treatment for Merkel cell carcinoma. Before I could enroll in the trial, they had to test my cancer to be 100 percent sure that it was Merkel cell carcinoma. I was overwhelmed when I found out all three molecular tests confirmed that it was.

I received my first infusion of avelumab in July 2014. After just three infusions, two weeks apart, I had my first scans. The nurse practitioner handed me the report as she prepared me for my fourth infusion. I had to read it over and over; it said that all my tumors had resolved. After what seemed like forever, Dr. Kaufman came over and confirmed what I had read; I was cancer free. It was one of the most powerful moments in my life.

There has been no sign of cancer since then, and in May 2015, Dr. Kaufman decided I do not need to take avelumab anymore.

Having stage IV cancer and coming so close to death has changed me, which has been hard for my friends and family. But in a lot of ways the changes are for the better. I spend every day thankful to be here. I am also grateful for the researchers who made this possible and I’m hopeful that the work they are doing will allow other people like me, mothers, fathers, sisters, brothers, husbands, wives, to have the same outcome that I have.

†The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute

View all Cancer Progress Report 2017 Survivors