June 4, 2012, is a date I will never forget.
The day began at ASCO, a major oncology conference, where a clinical trial showing positive results from a cancer drug I helped to invent was presented.Coming from a family filled with cancer, I was elated to have struck a blow against the disease.
Just six hours later everything changed.
I awoke from a colonoscopy to hear these words: “He has colon cancer. We’ll schedule an emergency surgery immediately.”
In a matter of seconds, at age 40, I transitioned from being a cancer drug discovery scientist to being a cancer survivor.
Ever since that moment, I have been both.
After an initial panic, the oncology scientist in me began to take control. I decided. “OK, this is a scientific problem. I am a scientist and science is always advancing. I will not assume I can’t beat this.” At that point I began to approach my cancer as the greatest research project of my entire life.
Initially I had performed academic oncology drug discovery – first at SUNY-Buffalo where I received a Ph.D. in medicinal chemistry (drug discovery) followed by a post-doctoral position at the Scripps Research Institute. Following a research position at Millennium Pharmaceuticals, I have been a researcher at the Genomics Institute of the Novartis Research Foundation (GNF) since 2003.
More than two years after my initial cancer diagnosis, I received an additional diagnosis of Stage I melanoma in January 2015.
This had a big impact: it blocked me from almost all colorectal cancer (CRC) clinical trials. I was devastated – all of my research and planning had hinged on access to clinical trials.
Once again, the scientist in me took over. Working with Human Longevity, a company founded by Craig Venter – one of the original scientists to decipher the human genome – we embarked on an ambitious scientific research project. Our goal: to cure my CRC with fully personalized immunotherapies at the absolute cutting edge of science, using methods not yet even entering clinical trials for CRC.
My melanoma blocking me from clinical trials had turned into a scientific blessing. We are working hard to cure me, and to use my case to illustrate how to potentially cure others. As a scientist, patient and advocate – this is thrilling beyond belief, the most exciting science project I can imagine.
This is why I always describe myself as “currently incurable”. This is a view I discuss frequently in my blog, “Adventures in Living Terminally Optimistic” written from the unique perspective of someone who is both a Stage IV cancer patient and a cancer scientist trying to help cure his own disease.
Will new scientific advances and our project save my life? I firmly believe that most cases of advanced CRC will be cured within my wife’s lifetime. I hope and am working hard to make it happen in my lifetime.
Dr. Tom Marsilje is a 20-year oncology drug discovery scientist with “currently incurable” stage IV colon cancer. He also writes a personal blog on life at the intersection of being both a cancer patient and researcher “Adventures in Living Terminally Optimistic,” a science column for Fight Colorectal Cancer "The Currently Incurable Scientist", and posts science and advocacy updates to Twitter @CurrentIncurSci. This guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 750,000 patients and caregivers.
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