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Dedicated to supporting continuing research by Dr. Pasi Jänne and his team at Dana-Farber
On August 8,
2014, I was diagnosed with stage IV lung cancer. My doctor told me that it was
"serious." When I did a quick internet search, I learned my median
life expectancy was 6-9 months. Serious indeed. Within a few days I was
introduced to Dr. Pasi Jänne at Dana-Farber who is on the leading edge of
research into genetically-targeted therapies for certain types of lung cancer.
Within a couple of weeks, testing showed that my cancer was one of the genetic
mutations (ROS1) he has been researching and I was able to begin an oral
therapy (Xalkori).
After 3 months of two pills each day, with virtually no side effects, scans
showed no evidence of disease and I was deemed to be in remission. I was biking
over 20 miles most days and hoped to complete the Pan Mass Challenge in August,
2015. It's a far cry from where I was just a few months earlier, barely able to
climb a flight of stairs, coughing uncontrollably, and with a resting heart
rate over 100.
Unfortunately, "in remission" does not mean "cured," which
I learned when my cancer began progressing again in June, 2015. Headaches were
added to the physical symptoms I had had earlier, and scans showed both
progression in the lungs and metastases in the brain. At the time there was a
promising new drug, lorlatinib, that could potentially help both areas but it
was not yet available. So the summer of 2015 was largely consumed by more
traditional chemotherapy and brain radiation.
Fortunately, I was able to participate in a clinical trial of lorlatinib,
another targeted therapy, starting October, 2015. In just six weeks, I had a
great response to the drug. Scans revealed that my lungs cleared up almost
completely and, most remarkably, my brain mets shrunk to near-invisibility.
I've returned to biking and am again hopeful of completing the Pan Mass
Challenge in the summer of 2016.
However, as with the crizotinib, it is a matter of time before the cancer
becomes resistant to lorlatinib and flares up. For me and thousands of others
like me, our hope is that the science stays at least one step ahead of our
cancer. Among many things I've learned on this journey is that for a variety of
reasons, none of them good, funding for lung cancer research is woefully
inadequate, despite the fact that it strikes thousands of otherwise healthy
non-smokers like me every year. Especially in a time when results have been so
positive, the leading labs struggle to pursue the most promising avenues of
inquiry.
So I am asking for your help. Amy & I have established a fund at
Dana-Farber, the Grief Family Fund for Innovative Lung Cancer Research. The
fund is dedicated to support work being led at The Jänne Lab
(http://jannelab.dfci.harvard.edu/) which, hopefully, will continue to find ways
to treat this disease. We are grateful for any assistance you provide.
With deepest appreciation,
Stuart