Daily Discoveries. It was supposed to be one of the best days of Tom Marsilje’s life. After years of hard work and determination, the research team he was a member of had developed a new drug to treat lung cancer. The same day the breakthrough treatment was announced at the 2012 ASCO conference, a doctor urgently told Tom’s wife the news: he had colon cancer, and they had to operate as soon as possible.
Tom’s a cheerful guy. He’s Stage IV, but prefers to think of himself as “currently incurable.” He undergoes biweekly chemo treatments just to keep the disease at bay, or “treading water,” as he puts it.
The Driving Force. Tom’s mother was diagnosed with pancreatic cancer when he was getting his graduate degree in Medicinal Chemistry. He and his sister were her end-of-life caregivers, and that only bolstered his desire to work in drug research.
Challenges, Chances and Looking Forward. In the five years since his diagnosis, Tom has become an advocate for cancer patients and clinical trial participants across the country. He works full-time as a research consultant for Novartis. His blog, entitled (in typical Tom fashion) “Adventures in Living Terminally Optimistic,” keeps readers informed on developments in cancer treatment.
Tom’s story – and subsequent role as cancer patient advocate – was recently featured in a Newsweek story titled “Cancer Clinical Trials: How New Search Tools Make it Easier for Patients to Find the Treatments they Need.” Shortly after receiving his diagnosis, Tom knew one of his best bets would be turning to clinical trials for treatment options. After beginning his initial search and realizing that there were more than 1,000 trial options, it became abundantly clear how complex the clinical trial discovery process must be for the majority of patients.
We bring patients together and talk about clinical trials 24 hours a day, every day. It’s about educating patients about new trials opening up and new data coming out and providing a space to talk about it.
Together with the advocacy organization Fight CRC and the health care technology company Flatiron Health, Tom developed the Late-Stage MSS-CRC Trial Finder. For patients and caregivers trying to navigate thousands of clinical trials, the tool uses the same criteria that Tom used when trying to find the best trial for his own diagnosis – whether the trial is open for recruitment, if it applies to a specific type of cancer, risk of failure and potential to help a patient suffering from late-stage cancers.
As another way to connect with patients, Tom cofounded a web community called the Colontown Clinic, which advocates for a bold new way to give patients and caregivers access to important information about colorectal cancer clinical trials.
Tom remarks, “I was shocked by my diagnosis, like anybody who gets diagnosed at a young age. But one of the things I was able to do from the beginning is separate the different hats I wear as scientist and patient. I consider it to be the greatest science project of my life.”
I have a lot of hope right now, in terms of the future for biopharmaceutical R&D because there are amazing things coming down the pipeline.
On November 14, 2017, Dr. Tom passed away after a five-year battle with colon cancer. As a prolific researcher, a determined patient advocate, and even as a patient himself, Dr. Tom’s boundless optimism was infectious. He embodied the spirit of what our researchers and scientists strive toward every day – improving lives. His presence, character and zeal will be missed.