After being diagnosed with pancreatic cancer, most people decide to slow down.
Instead, Lou Desfosses decided to pick up the pace – and pick up running.
He’d been biking for years, but he hadn’t run since high school. However, after running the Webster Turkey Trot around the time of his diagnosis, he decided he wanted to run more.
“Shortly after that race I said, ‘I’m going to do these races just to build myself up,’” he says. That’s when he set a goal to run in 50 races in a year. Some might call that crazy – even without a new pancreatic cancer diagnosis to deal with — but that’s just how Lou approaches life.
“Nothing I do is typical for stage 4 cancer patients,” he says.
In fact, his active lifestyle could be what has saved his life, because it’s how doctors found his cancer when they did. As a cyclist before his diagnosis, he had been preparing to do the longest mountain bike race in the world: The Tour Divide, which goes from Banff, Alberta, Canada, to Antelope Wells, New Mexico. However, his bike became damaged and he developed a hernia. Imaging of the hernia showed pancreatic cancer.
In January 2016, he had surgery with Eva Galka, M.D. Recovery from surgery was challenging, but once Lou healed, he decided to enroll on a clinical trial with his medical oncologist, Marcus Noel, M.D. The clinical trial aimed to find out whether adding an additional type of chemotherapy to the standard regimen would help keep the cancer at bay for a longer period of time than the standard treatment.
“At the time, that was the best, most promising chemo that they had for pancreatic cancer and they were expecting big things,” he says. “Unfortunately, it didn’t work out for me in the long run.”
He was on that clinical trial and stable for about two years. While he didn’t quite get the 50-race mark in a year because of some complications with his treatment – he did 4x races in his first year with pancreatic cancer – he did remain active throughout all of his treatment.
When his cancer started growing again, his team had more options. He went on another clinical trial looking at the same two drugs he’d been on before, but this time the clinical trial added a third drug that researchers thought might help the chemotherapy agents work better. Unfortunately, though, it caused too many side effects, so Lou had to stop it. He stayed on standard chemotherapy regimens for a while, running or walking as much as he could while receiving treatment.
In spring 2019, Lou’s tumor marker started creeping up and his scan showed some growth in his tumor. But his team had a new option to try.
When he had been diagnosed, Lou found out he was positive for the BRCA2 genetic mutation but at the time, in 2016, there hadn’t been any options to target that mutation for pancreatic cancer. Today, there is a PARP inhibitor that was approved only a few months ago for breast and ovarian cancers that have the BRCA2 genetic mutation.
Researchers think the drug may also benefit pancreatic cancer patients who have the BRCA2 mutation, so his oncology team was able to get the drug for him. He’s been on it for about a month now.
“I’m a pretty lucky man,” he says.
With this new treatment option, Lou continues to be as active as possible. He’s even run in the Wilmot Warrior Walk for the last two years, and he’s planning to do the Warrior Walk again this year, living up to his life’s motto every second he can.
“Even when you have cancer, you can still live life to the fullest, and that’s what I aim to do,” he says. “My motto is run to live, live to run, and I feel fortunate I’m able to continue running while living with cancer myself.”