It’s rare to hear someone say they’re grateful for a car wreck, but that’s exactly the case for 30-year-old Amanda Thomas, and her mom, Ann Nguyen. Both say that they never would’ve suspected Amanda’s underlying health condition if she hadn’t been rushed to the hospital following an accident in November 2017.
Doctors diagnosed Amanda with H3 K27M mutant glioma – a rare brain cancer that’s notoriously difficult to treat. The tumor wraps around the brain like a spider web and rarely responds to chemotherapy. The outlook is usually grim.
It was understandably hard for Amanda and her loved ones to be positive. But Ashley Sumrall, MD at Atrium Health’s Levine Cancer Institute (LCI), had hopeful news to share: Because Amanda had this particular type of brain cancer, she qualified for a Phase 2 clinical trial of a drug that could give her more time, if not save her life.
The drug, called ONC201, aims to kill cancer cells – without harming healthy cells – by shutting down the pathways that help tumors grow. The treatment consists of a simple pill, taken once weekly, that has no reported side effects.
When Ann heard about ONC201, she knew that it might be a good treatment option for her daughter. “This is a medicine that's already helped people,” she says. “A few people, but it's helped people. And then there are no side effects. So, I felt confident in it.”
Amanda started taking ONC201 in May 2018, and to date, she’s feeling much better. “For someone to say that you're only going to live for maybe a week, to living for 11 months now – that's a huge difference,” Amanda says.
She’s been able to enjoy life at home and do things she never would’ve imagined doing months ago, like writing and running around with her dog. And she’s made it her mission to tell people with the same cancer that they may benefit from treatment options besides chemo and radiation, like she has.
One year after her car accident, Amanda is doing better than she thought possible. There’s still no cure for brain cancer, but she and her care team are taking it day by day. And today, the goal is simple: to give Amanda more time to live her best life, surrounded by the people she loves.
