I am a huge fan of clinical trials.
No, I haven't participated in one, yet, but I understand first-hand the value of cutting edge medical research for patients. I have been living with a diagnosis of stage IV lung cancer for the past three and a half years.
When I was 47 years old, I was very busy planning my eldest son's bar mitzvah. I had also gotten a brand new iPad and as a result, had developed kind of an addiction to playing Candy Crush. I noticed one day that I could no longer completely straighten my right elbow. My elbow and the left side of my neck had been bothering me for a few weeks, so I decided to go see my primary care physician.
Little did I know, but this initial doctor's visit - for what seemed like minor aches and pains - would start me on a six month journey that would end in my lung cancer diagnosis. My primary care physician suggested I was just dealing with stress from the bar mitzvah planning and overuse of my iPad from Candy Crush and sent me to physical therapy. When physical therapy didn't help, I visited an orthopedist for a cortisone shot in my elbow and went to a different physical therapist, this time a specialist who dealt with shoulder to hand issues. No answers. Another cortisone shot. None of the medical professionals I visited seemed too concerned.
I knew something was wrong and I refused to give up and just live with these issues. I went to a rheumatologist and ruled out rheumatoid arthritis. Finally, I had an MRI of my elbow which revealed a bone mass that hadn't shown up in prior elbow X-rays. Now the level of concern ratcheted up. Pretty quickly, I was referred to an orthopedic oncologist. He thought the mass was benign, but scheduled a biopsy to make sure. Well, it wasn't benign. It was adenocarcinoma, a type of cancer that does not originate in the bones. That meant that the mass had metastasized from somewhere else in my body.
None of the medical professionals I visited seemed too concerned. But I knew something was wrong and I refused to give up and just live with these issues.
I had a PET scan which showed that the primary source of cancer was my lungs. Major shocker! I was a lifelong non-smoker and healthy eater, and I had absolutely no idea that I could get lung cancer. I also discovered that the pain in my neck was another bone metastasis, and there were several others in my ribs and pelvis. I had a brain MRI and there were eight tiny lesions in my brain. Nope, definitely not stress or overuse of the iPad!
Next is when the power of medical research kicked in. Recently, a lot has been learned about lung cancer. One of the most important discoveries is that not all lung cancers are the same. This means that not all lung cancers should be treated the same. At my oncologist's recommendation, I had testing done on a tiny, molecular level to the tissue removed from my elbow and discovered that I had a specific type of lung cancer caused by a mutation in a gene called EGFR. This made me a candidate for an oral form of treatment called targeted therapy. I had never heard of this. I only knew about traditional chemotherapy and radiation.
I was put on a newly FDA approved once-a-day pill that was created specifically to target EGFR mutations. In less than a week after starting this pill, my elbow hurt significantly less and I could bend it more. Pretty miraculous! I stayed on this medication for just shy of three years, although on average it tends to only be effective for one year. During this time, all of my brain lesions disappeared, my bones healed over in the areas of metastasis, and my main lung tumor shrunk slightly and then remained stable. I felt great, looked totally normal, and was able to live a regular life. I was the poster child for successful recent advances in medical research for lung cancer.
Recently, a lot has been learned about lung cancer. One of the most important discoveries is that not all lung cancers are the same. This means that not all lung cancers should be treated the same.
This targeted therapy medication allowed me to treat my cancer as a chronic illness, but unfortunately was not a cure. After close to three years, I had some slight progression in my main lung tumor. Again, I had a biopsy to determine what was causing this growth -- this time a lung tissue biopsy. My cancer had developed a new EGFR mutation called T790M, which was allowing it to get around my medication. Low and behold, a new targeted therapy had been developed and FDA approved in the years since my original diagnosis, specifically to target this T790M mutation!
I started this medication, also an oral once-a-day pill, approximately six months ago and have since had significant shrinkage in my main lung tumor. I continue to feel great and have a normal quality of life. This made the second time that medical research, quite literally, saved my life.
My current targeted therapy probably won't work forever for me either, but I am hoping that a new medication will be developed that will be available for me if and when I need it. Both medications I've taken would not have been options for me without participation in clinical trials by lung cancer patients who came before me on my journey. Clinical trials can be the best way to get breakthrough treatments for many patients, and I would definitely consider one for my next course of treatment.
This made the second time that medical research, quite literally, saved my life.
I decided that it wasn't enough for me to hope passively for new developments in medical research. I needed to get more directly involved. I pushed myself to learn more about the science behind lung cancer, voraciously reading journal articles and attending the ASCO (American Society of Clinical Oncology) 2015 and 2016 annual meetings in Chicago as a lung cancer advocate. I attended events held by LUNGevity Foundation and met numerous other survivors, oncologists, and other medical professionals.
Clinical trials can be the best way to get breakthrough treatments for many patients, and I would definitely consider one for my next course of treatment.
I now am active in research advocacy for lung cancer. Lung cancer is currently the deadliest cancer in the United States and receives the least federal funding per patient. I have told my story in numerous venues -- to pharmaceutical companies, survivors and advocates, and through print and social media. I believe it is extremely important to put faces behind lung cancer diagnoses so that the public can see how vital medical research is to patients.
I have met numerous medical researchers through advocacy work with the Department of Defense's Lung Cancer Research Program and the Scientist-Survivor Program at the AACR (American Association of Cancer Research). I was very surprised to learn that many medical researchers have never had the opportunity to meet a lung cancer patient! Until more recently, few survived long enough to become involved in advocacy. I have been invited to visit a number of lung cancer research labs to tell my story and motivate scientists in their search for new discoveries.
I am hoping for a future where no one dies of lung cancer. I truly believe that medical research that leads to breakthrough discoveries and clinical trials is essential to this future.