Alex Hepner: Back to Planning His Life and Future, Thanks to a Breakthrough in Precision Medicine

At 24 years old, Alex Hepner was entering the most exciting stretch of his life. A law student at the University of Ottawa with dreams of working in sports representation, he was healthy, driven, and living on his own near Parliament Hill. But in July 2024, a bout of persistent headaches sent him to the emergency room—a visit that jeopardized his plans for the future.

What began as a routine checkup turned into a life-altering diagnosis. A CT scan showed unexplained tissue swelling in his brain. Though his physician initially reassured Alex that it was not anything too serious, an MRI was scheduled almost immediately—unusually fast, Alex noted in retrospect. That Sunday night, surrounded by his family, Alex received the news: A tumor had been found in the frontal left lobe of his brain, a region critical to language and memory. He was told it was likely a low-grade glioma, but confirmation would require a surgical biopsy. Worse still, surgical removal wasn’t an option. The tumor was too embedded in the brain tissue to resect safely.

The news devastated Alex and his family. While he tried to maintain composure, his parents, Julie and Richard, were shaken to their core. “I cried for 80 days straight,” Julie recalled. At one point, after misreading the preliminary pathology report, the family feared he had glioblastoma, the most aggressive form of brain cancer. “They thought it was a death sentence,” Alex said. “That was the hardest part—watching how much pain they were in.” He also had to put his life on hold to address the health situation. “I stopped dreaming about the future before I’d even had the chance to start,” Alex said.

The prevailing medical view was to adopt a “watch and wait” approach, monitoring the tumor’s progression without intervention. But Alex was fortunate to be referred to Princess Margaret Cancer Centre in Toronto, where neuro- oncologist Dr. Warren P. Mason and his team recommended a more proactive path. Dr. Mason explained that while treatment for low-grade gliomas had traditionally been limited to surgery, radiation, and chemotherapy, a newly approved targeted therapy, vorasidenib, was showing remarkable promise in clinical trials.

Vorasidenib is a brain-penetrant oral therapy that targets altered or mutated IDH proteins, which are commonly found in low-grade gliomas. For Alex, this drug represented a glimmer of hope. But first, he would need a biopsy to confirm the tumor’s IDH mutation status. On August 28, 2024, Alex underwent brain surgery to extract a tissue sample. The procedure was terrifying, but it went smoothly.

A few weeks later, Alex received the call he had been hoping for: The biopsy confirmed an IDH2 gene mutation, qualifying him for vorasidenib. Not only that, but the drug had just been approved by Health Canada. “That was the best phone call of my life,” he said.

Alex began treatment on October 28, 2024. He takes the pill every morning on an empty stomach and, so far, has experienced minimal side effects. The main concern—liver enzyme fluctuations—is monitored through regular
bloodwork. Early on, he traveled frequently between Ottawa and Toronto for tests, but over time his care team transitioned to monthly remote monitoring. A recent MRI showed no tumor progression, a major milestone in a disease where stability is a victory. “This drug gave me hope. It let me start dreaming again” Alex said.

Dr. Mason, who leads the Gerry and Nancy Pencer Brain Tumour Centre at Princess Margaret Cancer Centre, emphasized how extraordinary this research advance is. “Therapeutic advances for primary brain tumors are few and far between,” he said. “Vorasidenib is the most significant advance in two decades. It offers real hope for delaying radiation and chemotherapy—and possibly changing the biology of the disease itself.”

For Alex, the drug has been transformative. “It feels like I’m finally living again,” he said. He’s resumed law school, caught up on missed credits, and secured a summer internship. He’s playing sports again, thinking about long-term career goals, and even contemplating relationships, something he had deemed impossible after his diagnosis. “There was a time when I thought I’d just fade away before I had a chance to build a life,” he said. “Now, I can actually picture a future.”

His parents share that cautious optimism. “It’s surreal,” Richard said. “He looks and acts like any other 25-year-old, and that’s because of this drug.”

As someone whose life has been reshaped by science, Alex is now using his legal training to advocate for continued investment in cancer research. “This drug didn’t appear out of nowhere. It took 15 years of research. And there are people today who still can’t access it,” he said. He’s raised over $25,000 for Princess Margaret Cancer Centre and recently began working with the drug’s manufacturer as a patient consultant.

To policymakers, Alex has a simple message: “Cancer research saves lives—mine is proof. But it doesn’t happen without funding. We need to keep investing so that more people get the future I almost lost.”

I’m a walking, talking example of the difference cancer research can make.