Living with stage 4 lung cancer since 2012. Treated with nivolumab in a clinical trial. Learn more about my story below.
I was first diagnosed with lung cancer in 2012. I hadn’t been to the doctor for about 10 years, and I kept gaining weight and didn’t know why. I finally went to the doctor because I thought something was wrong with my thyroid. During the exam, she felt a little knot on my collar bone, so she sent me to get a CT scan that day. And sure enough, the CT scan showed that there was a problem, but it wasn’t what I’d thought.
Within three weeks, I went from having no clue whatsoever that I was sick—I was working full time and doing dog agility several nights a week and every weekend—to seeing an oncologist and learning that I had stage 4 lung cancer.
When my oncologist took me off of the treatments, the tumors started growing again by leaps and bounds. They didn’t spread, but they grew back to the size they were before.
At that point, my oncologist said that I could start a new chemo regimen (I had been so sick from the first treatment that thinking about going through it again was not very encouraging) or he said I could go into a clinical trial of an immunotherapy drug called Opdivo. We went right into the clinical trial.
The main side effect I have, funnily enough, is a problem with my thyroid. I just take a little pill to treat that every day. I’m also a little bit more fatigued the day of and the day after a treatment. If I don’t have anything to do, I’m more willing than normal to just veg on the couch. But if I do have something to do, I’m able to do it.
When I entered the clinical trial, I really didn’t have much hope for it to help me personally. I was really doing it because I thought my time on earth was probably pretty limited, and that I might be able to help future generations.
But it worked from the get go. I had to have CT scans every six weeks. The first scan showed that the tumors were completely stable. And they have been completely stable since then.
When the doctor told us that I had stage 4 lung cancer, he asked if I had any questions. My question to him was whether I could keep playing agility. So that just shows a little bit about what our attitude was. It was “life continues until it doesn’t.”
I started out with a combination of chemotherapy, Alimta, and Avastin, which I had four cycles of. Next, my oncologist put me on Avastin only for four more treatments. And the cancer responded. The tumors shrank. But my body didn’t react well. I was horribly sick from it.
I have two dogs. One is an American Eskimo, named Cotton. She is very opinionated, and very smart. I also have a Sheltie named Barney. They’re so much fun. And I’ve met some incredible people by doing agility. Before, I was one of those people who went to work, and came home; went to work, came home. I really didn’t have many outside interests. But agility changed that. All of a sudden I was hardly ever at home. I’m not an athlete at all, but it is one fun sport.
Opdivo has let me live my life exactly how I want to. People talk about a “new normal” after cancer, but I don’t have a new normal. I’m still living my old normal.
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*Immunotherapy results may vary from patient to patient.
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CRI Fellow Dr. Tim Fessenden of MIT shared his day with the CRI social community on Friday, June 26.
CRI hosted esteemed immunologists Carl June, Miriam Merad, and E. John Wherry to highlight immunotherapy’s pivotal role in addressing the COVID-19 pandemic.