A Consumer's Perspective: Linnea Duff
I was diagnosed with NSCLC in April of 2005; more than nine years ago. Forty-five years old, my chronic cough and shortness of breath had been attributed to adult onset asthma. As someone with no smoking history, it never occurred to me that I might be diagnosed with lung cancer.
Prior to my diagnosis, all I really knew about lung cancer was that the overall five year survival rate was 16%. As a mother of three, I was determined that I would beat those odds. At stage IB, I was a candidate for surgery and adjuvant chemo, and I underwent both. Despite this aggressive approach, my cancer returned almost immediately.
With few viable treatment options we elected to take a watch and wait approach and I remained treatment free until June of 2008. My health again failing, a biopsy confirmed metastatic spread and I was restaged to IV. One more line of therapy proved ineffective and it looked as if I'd run out of options. However, a sample from the biopsy for re-staging had been submitted for genetic testing: it came back positive for a rare ALK mutation found in only 4% of those with NSCLC. Better yet, there was a phase I clinical trial for an experimental therapy that targeted ALK mutations.
The rest is personal history. I became the fourth person in the world with NSCLC to try this experimental therapy and I was fortunate enough to have an amazing response.
My good fortune--being in the right place at the right time with the right mutation--was newsworthy, and garnered a mention on the ABC World News. The hospital where I receive my treatment was deluged with phone calls following the broadcast and my oncologist, who knew I liked to write, suggested that I start a blog. Life and Breath (www.outlivinglungcancer.com) was my first step into advocacy.
I had also joined an online support group where I actively encourage others to get tested for genetic mutations. I've attended summits sponsored by The Lung Cancer Alliance, National Lung Cancer Partnership, Global Resource for Advancing Cancer and Lungevity. I am a member of the National Parent Committee for Camp Kesem as well as the Patient and Family Advisory Council at Massachusetts General Hospital. I've ignored the fact that I am uncomfortable in front of a crowd and have shared my story whenever asked to do so, most recently for cancer researchers at the Broad Institute at MIT.
In addition, I have served as a Peer Reviewer for the Department of Defense Lung Cancer Research Program; three online cycles and one onsite review. It is intellectually challenging and a big commitment. But that is part of what I like so much about serving as a Peer Reviewer: it's hard work but you come away from it feeling as if you have made a significant contribution; it is incredibly rewarding.
As I enter my tenth year of surviving lung cancer, I am more aware than ever of the importance of lung cancer research. On May 20th I had the lead in dose for what is now my third phase I clinical trial. Knock on wood, I think I'm responding to yet another experimental therapy. Thus far, the agents in the first two phase I trials I participated in have gone on to receive FDA approval and are now readily available therapies for NSCLC. With a whole lot of luck, this agent will do the same.
It's an exciting possibility to consider; that even if advanced cancer can't be cured, perhaps it can be managed. Clinical trials are now my lifeline, cancer research my hope. As Peer Reviewers, we get to be part of that process. How cool is that?