Living Fully in the Face of Brain Cancer

When Brian Loy learned he had a brain tumor in late 2019, everything changed. He was in the middle of a busy life living in Georgia — being a dad, enjoying his mechanical and electrical work, and planning a future for his family.

Then, things changed.

While in bed, Loy experienced a 12-minute grand mal seizure. Afterward, he displayed some confusion and an inability to perform basic tasks, such as tying his shoelaces.

An MRI revealed a brain mass, and Loy underwent a brain biopsy in Augusta, GA. He was diagnosed with a low-grade IDH-mutant glioma — a slow-growing brain tumor with certain genetic changes that usually affects younger adults.

He was 37 at the time.

Once he learned his diagnosis, Loy’s first thoughts were: “OK, thanks. It clearly isn’t good, but I feel fine. Are we done with this? Can I go now?”

Nonetheless, he knew there were some big decisions he would have to make, no matter how healthy he felt.

Loy and his wife, Krystal, were already relocating to Florida for a career opportunity. The couple arrived in Melbourne on New Year’s Day 2020. Three weeks later, Ricardo Komotar, M.D., co-director of surgical neuro-oncology at Sylvester Comprehensive Cancer Center Brain Tumor Institute, who is also professor and program director in neurosurgery and director of surgical neuro-oncology at the University of Miami Miller School of Medicine, performed brain surgery on Loy.

Because of the tumor’s location, the team took extreme caution to preserve Loy’s cognitive functions. Therefore, he remained awake during the surgery and was able to answer Dr. Komotar’s questions as they were posed. The scalp is numbed, so patients don’t feel the surgeon’s maneuverings during the procedure.

Loy’s tumor was too close to vital brain areas to be removed entirely, so a portion had to stay in place.

Following the surgery, Loy was referred to Macarena de la Fuente, M.D., chief of neuro-oncology and co-director of Sylvester Brain Tumor Institute, for ongoing treatment. Dr. de la Fuente, a brain tumor expert, had been involved in the introduction of a promising early-stage drug called vorasidenib.

Vorasidenib works for tumors with mutations in the IDH1 or IDH2 genes — exactly what Loy had. The mutations are “mistakes” that cause cells to grow abnormally, eventually resulting in tumors.

She presented Loy with two options: chemotherapy plus radiation or participation in a clinical trial for vorasidenib.

“We meditated and talked about it and agreed to participate in the trial,” says Loy. “The big issue was the kids,” says Krystal. “We have a young family, and the side effects of radiation and chemo would be upsetting to them.”

Patients were required to show one year of no growth in the tumor to qualify. Loy met all of the other criteria, so the wait began. Regular MRIs showed no tumor growth, so in 2021, he entered the study, which included over 300 patients from 10 countries. Participants received either the drug or a placebo (“sugar pill”).

Loy’s seizures declined in frequency, and the tumor even shrank. In fact, he has just celebrated one year of being seizure-free. It turned out that he was indeed in the group receiving medication and not the placebo.

“It was smooth and easy,” he says. “I just had to take one tablet every morning, have routine bloodwork, and undergo MRIs every three months.” Loy continues on the medication and has his scans to this day.

The study was going so well that the experiment ended early, and everyone on the placebo was switched over to the medication. One result stands out: Patient survival without more tumor growth was significantly better in the vorasidenib group than the placebo group: 27.7 months vs. 11.1 months.

The study, whose co-authors include Dr. de la Fuente, was published in The New England Journal of Medicine and represents a milestone in brain tumor research. The results were so dramatic that they played a key role in the decision by the U.S. Food and Drug Administration to approve vorasidenib for patients with tumors like Loy’s.

“He’s done amazingly well,” Dr. de la Fuente says. “His tumor continues to shrink, and he’s avoided radiation and chemo for more than five years. This is an outcome we dream of. I’ve treated patients who started similar drugs 10 years ago, and they’re still doing well. We’re hopeful Loy can be one of them.”

Loy and his wife express deep appreciation for the care provided by the entire team at Sylvester.

Krystal, who has since started her own small marketing and consulting business, says, “Whatever the future holds, Dr. de la Fuente is going to be a huge part of it. We trust her implicitly and explicitly. If anything were to change, she absolutely would be the third part of the conversation.”

What would Loy and his wife say to other patients in similar circumstances?

Krystal says, “It’s crucial to have a positive attitude and outlook. While it’s scary and unknown, if you have a team you can trust, as we do, one that’s completely behind you, make the decision to try the medication. It absolutely changed our lives, and we could do the same for you.”

Loy adds, “We’ve been very blessed with the results so far. This has made it possible to be at our kids’ ball games and other activities. We’re privileged to have been part of this study and help others in the same situation.”

Written by Mark Gaige, a contributor for Sylvester Comprehensive Cancer Center.

Tags: brain tumor care in Miami, Brain Tumor Institute, Dr. Macarena De La Fuente, Dr. Ricardo J. Komotar, Sylvester Comprehensive Cancer Center