Five years ago, Mike Schuster’s life changed forever.
That’s when the Norman, Oklahoma, resident was diagnosed with glioblastoma, a form of brain cancer and the same disease took the lives of Sen. Edward Kennedy and Sen. John McCain.
As Schuster nears the five-year anniversary of his diagnosis with the deadly cancer, he’s almost tripled the average life expectancy for patients with glioblastoma.
Doctors can’t say why Schuster has lived where others have succumbed to the disease. But they believe it may be because of an experimental drug he received — one that was developed by scientists at the Oklahoma Medical Research Foundation.
For Schuster, the first clue that something was awry came in the fall of 2015, just past his 50th birthday. While at work, he passed out with no warning.
He was rushed to the hospital, where an MRI revealed a brain tumor the size of a kiwi just above his right eye. “I’d been healthy all my life,” Schuster said. “No medical issues at all. I just couldn’t believe that this was happening.”
Of the more than 120 types of brain and central nervous system tumors, Schuster’s type is the most aggressive. The standard treatment regimen involves surgery to remove as much of the tumor as possible, followed by radiation and chemotherapy. Still, the tumor almost always grows back.
With treatment, the median survival — which means half of patients live longer, and half die sooner — is 12 to 18 months. Only 1 in 20 glioblastoma patients will live five years.
In a procedure that lasted six hours, doctors removed as much of Schuster’s tumor as they could. His surgeon explained that he’d succeeded in excising most of the tumor. But, he said, like most glioblastomas, this one had “tentacles.” Tiny arms of the tumor had grown into surrounding brain tissue and could not be removed.
Schuster began follow-up radiation treatment at the Stephenson Cancer Center at the University of Oklahoma and started chemotherapy with a pill called temozolomide. Together, the treatments were intended to kill the tumor cells that remained in the fissures of his brain.
“If you leave even a single cancer cell in the brain, it can regrow,” said Dr. James Battiste, the neuro-oncologist who oversees Mike’s care at Stephenson. “The brain is fertile soil for these tumors. That’s why chemo and other therapies are so important.”
Following radiation — doctors limited his treatment to six weeks for fear of triggering a secondary cancer — Schuster stayed on temozolomide. But just after the one-year anniversary of his diagnosis, an MRI revealed a new tumor.
A second surgery once again removed the primary tumor. Still, many glioblastoma tentacles had escaped surgeons’ reach, remaining lodged in Schuster’s brain.
Schuster knew those tentacles were, in essence, seeds that could sprout another full-blown tumor in a matter of weeks. He told Battiste he was willing to try anything to beat back the glioblastoma. He’d read about clinical trials of experimental medications. Was there one that might help him?
Battiste, in fact, was testing a new drug that, he said, “just seemed suited for Mike.” It was an investigational medication for glioblastoma that had been born just down the block from Stephenson, in the labs of OMRF.
OKN-007 was initially discovered by OMRF scientists Dr. Rheal Towner and Dr. Robert Floyd. Pharmaceutical company Oblato, Inc., acquired all rights to OKN-007 from OMRF, and the company is now testing the investigational drug in a Phase 2 clinical study of 56 recurrent glioblastoma patients at eight sites across the U.S.
In addition to glioblastoma, the drug has also shown promise in DIPG, an inoperable and rare pediatric brain cancer. This summer, the FDA awarded OKN-007 two new designations that give it special status and priority review.
In August, Schuster celebrated his 55th birthday. “I’ve had no side effects at all,” he said. “I feel really good.” He and his wife Teresa even got to attend their son’s wedding this summer.
Schuster now travels to Oklahoma City each week for infusion treatments with OKN-007 and feels certain he made the right decision when he opted to participate in the clinical trial.
“Let’s just say I’ve been very blessed. It’s pretty cool how this stuff is working.”