Ryan Bayer first noticed something was off in the fall of 2016. When he shaved, it felt like some of the feeling was missing on the right side of his face.
After the Howells, Nebraska, man finished the harvest — he runs an insurance agency with his partners by day and farms with family on the side — he noticed the same lack of feeling when he scratched his right leg. He thought it might be a pinched nerve in his back.
His wife, Jamie, sent him to a doctor in Norfolk. An MRI showed a mass in his brain. Eventually, he was referred to Nebraska Medical Center in Omaha.
Tucked in the middle of his brain, the mass was inoperable. Eventually, tests would show it to be a rare and aggressive type of brain cancer that had been classified by the World Health Organization only months before.
The couple set off on a road trip, driving to medical centers in Colorado and Kansas and on to the Mayo Clinic, an odyssey Bayer described as “a lot of crying, a lot of miles.” They sent his records to Duke University Medical Center and talked to officials at the MD Anderson Cancer Center.
“Nobody wanted to touch it,” Bayer said. “And I don’t blame them, because they thought I’d lose too much of my motor skills. And they all had, unfortunately, the same bleak outlook. A year is about what they gave me, every one of them.”
Since they couldn’t offer anything he couldn’t get in Nebraska, they advised him to go home.
Back at the Nebraska Medical Center, Bayer underwent chemotherapy and radiation. If there was a side effect, he got it — nausea, blood clots, headaches and more. The treatments worked, until they didn’t. Neither did a second chemo drug.
At the time, Dr. Nicole Shonka, his neuro-oncologist at the Omaha hospital, had been involved in a study of an experimental drug for another type of brain tumor.
The drug hadn’t produced particularly great results in a separate study of patients with recurrent glioblastoma, the type of brain cancer that recently killed Sen. John McCain.
But that study also had included a few patients with the same type of tumor that Bayer has. And they had done pretty well.
Its maker gave her permission to give the drug to Bayer.
Now 38, he became the first brain cancer patient at the medical center to receive the drug, in November. Since then, his original tumor has shrunk to a trace and a couple smaller nodules have disappeared. And there have been no side effects.
“If this thing works and people don’t have to go through what I did, if they figure out what they have and don’t have to go through the radiation and chemo (and) can go right to this (drug), God bless it,” he said. “That’s what we’re after.”
For Shonka, the moral of the story is that researchers need to keep learning more, and to pursue a trial if it shows promise, even if it comes in a small group of patients and not the original targets.
She recalls seeing only one other patient with Bayer’s type of cancer, known as H3K27 M-mutant midline glioma. The average survival is about a year.
“And so this has been nothing short of miraculous,” she said.
Oncoceutics, the Philadelphia-based maker of the drug, known as ONC201, now plans to seek approval from the U.S. Food and Drug Administration to use the drug in patients with Bayer’s tumor type.
A targeted therapy, it acts by blocking some of the molecular pathways that drive cancer cell growth, Shonka said.
She expects Bayer to stay on the drug indefinitely. He is among 36 patients — 17 adults and 19 children — with his tumor type to receive the drug as an expansion of the earlier study. As of May, the patient who’d been taking it the longest had finished two years of treatment.
Bayer, meantime, is working to regain his strength. He’s back in the office three or four days a week. And the father of four kids — ages 15, 13, 11 and 7 — is once again able to attend their sporting events. Before, the effort and the noise were too much. Jamie recorded them so the family could watch them at home.
He said he feels blessed, and thankful for his wife, for Shonka and the staff at the medical center, and for the couple’s friends and family in Howells who helped care for their children.
And for medical advances.
His father died of colon cancer at age 39. Bayer started getting checked at 25. If his father had been diagnosed today, he said, his story might have been different.
“There’s so many more things they can do today than they could do back in 1991,” he said. “I’m pretty blessed to be in an era of time where there’s this type of medicine coming out to address the tumor that I have.”