Can you share a little about your journey with lung cancer?
In 2007, at age 59, I found myself sitting in a hospital cubicle at Cleveland Clinic with my wife and three adult children who had traveled from across the country to support me. The doctor’s words: “Bill, you have adenocarcinoma non-small cell lung cancer, stage 4. There is nothing we can do. No surgery, no radiation, nothing.” I was given no more than two years to live.
We were all in disbelief. I had been very active since retiring after 30 years in education. I had hiked through 2167 miles from Georgia to Maine on the Appalachian Trail, biked thousands of miles in the US and Europe, and had just recently participated in Senior Olympics. And besides, I had never smoked! In the couple of years leading up to my diagnosis, multiple doctors had brushed off my complaints of a nagging pain deep in my chest when coughing. I was refused a CT scan and eventually had to arrange for one myself. This is what led to my cancer diagnosis!
“I was refused a CT scan and eventually had to arrange for one myself. This is what led to my cancer diagnosis! ”
Back in 2007, there was no talk of the ALK mutation and there were very few treatment options. Tarceva (a targeted drug intended for EGFR mutation) was my main hope of slowing the cancer down. By 2009, Tarceva had failed me along with six other chemotherapy drugs. I had visited several oncologists around the country to no avail. My last oncologist told me there was nothing more they could do and sent me home to die with tears in his eyes. They didn’t think I would survive to see Christmas that year.
One evening in June 2009, with my quality of life quickly declining, I was lying on my couch watching the national news on ABC. It was then that a young lady came on the screen and said the words I’ll never forget: “I have adenocarcinoma, non small cell lung cancer and it’s melting away”. I looked over at my wife as she looked at me. I went on the ABC news website, and found the name and email of Dr. Alice Shaw at Massachusetts General. As I would later come to find out, the young lady on the news was our very own advocate, Linnea Olson, also a patient of Dr. Shaw’s.
I emailed Dr. Shaw, and to my surprise, she emailed me back saying we needed to talk and asked for my phone number. Calling me, she explained that it was a very new clinical trial, that only a small percentage of maybe 7-8% qualified, and that I would need to travel to Boston from Ohio with no guarantees. I told her I would be there the next day! She laughed, but knew how serious I was, for this was my last hope. After a visit to Boston, my biopsy sample was sent to California for biomarker testing. The waiting was excruciating, but, at last, a very excited Dr. Shaw called me on a Sunday with the news that I had tested positive for ALK and that I qualified for the clinical trial.
The rest, as they say, is “history”. While I’ve had many ups and downs, that first clinical trial tablet I started in August 2009, Crizotinib (Xalkori), gave me a new lease on life. As my quality of life improved, I told my wife to hang on, we were going to take full advantage of my new-found life! Intermingled with traveling the world, including all seven continents, 59 of the 61 National Parks, I have been a constant patient of the wonderful Dr. Shaw and on numerous clinical trials. Crizotinib put me back on my feet for 4 1/2 years. Then brain mets led to surgery, and a new Brigatinib clinical trial again gave me a good quality of life for almost 3 years. I am currently on another clinical trial for Lorlatinib.
What is something you know now that you wish you knew when first diagnosed? What would you advise a newly-diagnosed patient?
When asked what I would have done differently in the beginning, I would have simply been more of my own advocate and been more aggressive in finding the cause of my pain. As far as what has lead to my longevity (10 years on ALK targeted treatment) and good quality of life, I spend time at our local Y, lifting a few weights, the eliptical machine and I love to swim. I recently had a total hip replacement, so the pool is off limits for a while. Just for the record, I’m 70, had my hip replaced, and I’m already walking around town with a cane irritating people on my third week post-surgery.
Are there any things you do (nutrition, exercise, meditation, etc.) that you believe have helped with your longevity or general wellness?
As far as food, I follow Dr. Shaw’s advice and eat whatever I want in moderation. Light meals with a few snacks in between. I even have the occasional beer or two with friends.
Are there any specific things you do that help you remain positive and focused on life? How do you reduce anxiety about the unknown?
While I have directed many with lung cancer towards biomarker testing over the years and I always try to stay abreast of current ALK research, I believe it’s just as important to try and put cancer out of your mind as much as possible. I encourage every patient to do that, as hard as it can sometimes be. You can start small. Perhaps just with one day with no ALK website, no cancer articles, no cancer talk. It really helps me, hopefully it will also help others. It also helps me that I have the greatest doctor in the world in Dr. Shaw and totally trust she will be there for me.
“I believe it’s just as important to try and put cancer out of your mind as much as possible…You can start small. Perhaps just with one day with no ALK website, no cancer articles, no cancer talk. It really helps me.”
November 11, 2019
