Cancer Progress Report - Cancer Progress Report 2015

I was diagnosed with stage 4 nonsquamous non–small cell lung cancer in 2012. Chemotherapy made me really sick and nobody expected me to be alive today, much less still doing well. But I’m receiving an immunotherapy called nivolumab (Opdivo) through a clinical trial and it has given me my life back. I feel great and I’m rarely at home because I have a very full calendar that keeps me out and about doing things that I think are fun.

My journey with cancer began when I went to a primary care physician for the first time in 10 years at the end of October in 2012. I had always been skinny, so after putting on a lot of weight I thought I had a thyroid problem and decided to make an appointment.

During the exam, the doctor felt a knot on my collarbone and ordered a CT scan. The scan results showed that I didn’t have a thyroid problem but there were some “funny cells” that needed checking out with a PET scan.

I didn’t think to ask what a PET scan was but I read on the internet later that it is often used to detect cancer. Even though I had had an inkling I might have cancer, I still cried a few tears when the doctor called to tell me that the PET scan showed I had stage 4 lung cancer. I had been hoping that it was going be anything but lung cancer because my experience with the disease had not been good. My dad had died of lung cancer at age 49.

Even though the primary care physician was not a doctor I knew before this journey began, she took me and my husband under her wing and really guided us through the whole process. I call her my angel doctor. When she called to tell me that I had lung cancer, she had already set up an appointment for me the next day with an oncologist and we went back to visit her after each oncologist appointment. When we told her that the oncologist had arranged for a biopsy appointment several weeks after we saw him, she got on the phone and had the appointment moved to that very day.

The biopsy showed that I had nonsquamous non–small cell lung cancer, and I immediately started on a cocktail of chemotherapy—carboplatin, pemetrexed (Alimta), and bevacizumab (Avastin). The tumors did respond to the chemotherapy, but the treatment also made me really sick. During my chemotherapy it was difficult for me to walk from my living room to my kitchen. Eventually my body couldn’t handle it anymore and the oncologist switched me to a maintenance therapy.

But that still made me sick, so after about eight weeks I stopped all treatments and the tumors began to grow immediately. At that point, my oncologist told me I had two options. One was chemotherapy that he said usually didn’t work as well as the chemotherapy I had already received and had worse side effects. The other was a clinical trial. I thought for about one minute and I chose the clinical trial.

I began the clinical trial in July 2013, at The University of Texas Southwestern Medical Center, and I’m still on it. I’ve had a really excellent response to nivolumab. My tumors haven’t gone away, but they haven’t changed since I started nivolumab, they just sit there. Sometimes the radiologist who reads the CT scans I have every six weeks calls them scars, although my oncologist doesn’t agree with that.

Nivolumab has been a miracle drug for me, especially compared with chemotherapy. The only side effect I have, ironically, is that my thyroid stopped working so I have to take a pill for that every day. I live my life like I did before my diagnosis, I run drills with my dogs several days a week, and I barely realize that I’m being treated for lung cancer anymore.

I’ve heard that adult participation in clinical trials is extremely low, but I tell anybody who will listen that being in a clinical trial has saved my life.