Tom Marsilje, a relentless advocate for cancer patients, dies at 45

When Tom Marsilje launched a website in May to help people with late-stage colorectal cancer find possible treatments through clinical trials, he pointed out the irony: “The ultimate CRC clinical trial advocate is unlikely to ever do a clinical trial,” he said.

He was right.

Marsilje, a Novartis scientist who helped develop a cutting-edge lung cancer treatment — and who, after his own colon cancer diagnosis, became a fierce advocate for his fellow patients — died Tuesday afternoon at a hospital in San Diego. He was 45.

The cancer support community was reeling in the wake of the news, with people expressing deep sadness at his passing — and also, surprise, despite Marsilje’s recent social media posts describing his decline.

In his last blog post two weeks before he died, he remained positive while describing in unflinching detail the humbling experience of becoming bed-bound not long after his cancer spread to his brain. “Like me, you can find resolve in the HOPE that the situation is only temporary,” he wrote, “and that the ship will quickly right itself where it needs to be.”

Erika Hanson Brown, founder of Colontown, a patient support community, said: “People were really convinced he’d make it, because he was convinced. And they are devastated.”

Rebecca Keller, president of the Gloria Borges WunderGlo Foundation, which supports people with colorectal cancer, said Marsilje had delegated to her the responsibility of posting his final statement on his blog (which she said would be posted soon), as well as writing a formal announcement for the cancer community.

By his own account, Marsilje spent much of his life as an introverted, quiet scientist, most in his element when he was working with data. But his cancer diagnosis in 2012, when he was just 40, set him down a new path. He became a vocal and admired leader in the cancer patient community, known for doing everything he could to help his fellow patients find promising treatments and for urging them to aggressively take charge of their own care.

“When he knew he wasn’t going to be around forever, he just really came out blazing for patient advocacy,” said longtime friend James Cuevas.

Beyond his legacy as a patient advocate, Marsilje made a major contribution as a medicinal chemist.

He was the first researcher to synthesize a drug for lung cancer now sold as Zykadia by Novartis, where he had worked since 2003. The drug, which attacks a mutated enzyme characteristic of some cancers, was originally approved only for some lung cancer patients who had failed other treatments. But Marsilje lived to see the drug he invented get approved in May as a first-line treatment for certain lung cancer patients. (He also co-authored a paper published just a month before he died in the journal Cancer Immunology Research proposing a roadmap to drive forward immunotherapies for colorectal cancer.)

In 2013, when Marsilje found his cancer had spread and was no longer curable using existing treatments, he plunged himself into a realm with which he was deeply familiar: research medicine, this time from the perspective of a patient. Even as someone with a Ph.D. in medical research, he said he found the available information nearly impenetrable.

He built spreadsheets to help make sense of the clinical trials that might offer hope of immediate or long-term treatments. Word began to spread of his spreadsheets, and his expertise. Others in the colorectal cancer community began reaching out for guidance, and he gave it freely.

“Even in his own 11th hour he would help someone,” Keller said. “He was just an amazing advocate among all advocates.”

And when it came to searching for his own possible treatments, she said, “he left no stone unturned.”

He underwent surgery, radiation, and chemotherapy, like many patients, but he pinned his hopes on promising immunotherapy treatments being tested in clinical trials. But he was thwarted again and again.

An unrelated health condition and medical complications repeatedly shut him out of tantalizing clinical trials. Last year he even tried working with researchers at the University of California, San Diego, to study his genomic data in hopes that it might be able to be used to design him a personalized vaccine as part of a clinical trial. But his worsening condition disqualified him from that and other potential clinical trials. In the weeks before he died, he finally got the chance to try an immunotherapy cocktail prescribed off label, though not as part of a clinical trial.

Marsilje was a prolific writer on his blog, “Adventures in Living Terminally Optimistic,” where he provided updates about his own medical plans and dissected clinical trial results in terms that any patient could understand. His tone was unfailingly upbeat: He posted pictures of himself plunging into his backyard swimming pool with the hashtag “#CannonballLife.” His characteristic signoff on many of his posts: “To Life!”

Another motivation behind his blog: So that his daughters could read it when they got older if he wasn’t there anymore, longtime friend Kristy Cuevas recalls Marsilje telling her.

Those daughters were at the center of Marsilje’s drive to extend his life. Less than six weeks before he died, he defied his declining health to be there for one of his daughters. “I wouldn’t miss Amelie’s 4th grade school play today for any reason!!” he wrote on Facebook.

Marsilje leaves behind his wife Veronica Gauss-Marsilje; their daughters, 10-year-old Amelie and 6-year-old Eleni; and his sister Anne Marsilje.

“He would tell us all the time: ‘Yes, I’m doing for this for the community. Yes, I’m doing this for everyone else — but at the base level I’m doing this for my girls so that hopefully I can live longer for them,’” said Kristy Cuevas.