Three years ago, Kevin Yndestad, of Naperville, was an active student at Bradley University.
He kept busy working in the college admissions department, serving as treasurer and house manager of Theta Chi, and studying business. That is, until he found out he had inoperable brain cancer.
“My mom was on her way down, and I called her and said, ‘Hey, Mom. I’ve got a brain tumor,” Yndestad said matter-of-factly.
Upon learning of the tumor, Yndestad decided to call a retired neurosurgeon he had met while volunteering for a pediatric cancer ski trip.
That doctor arranged for him to be seen by specialists at Lurie Children’s Hospital, where they began treatment.
But the drugs used on Yndestad caused an almost fatal side effect: a blood clot that stretched across his chest over his heart and lungs.
After open heart surgery for the clot, Yndestad needed a new approach. Researchers at the Northwestern Brain Tumor Institute were testing just what he needed — a new cutting-edge treatment.
Thanks to a partnership between Children’s and Northwestern, Yndestad was able to move into a clinical trial for treatment there.
“His disease was still progressing. … He was much more neurologically impaired,” said Dr. Jeffrey Raizer, neuro-oncologist at Northwestern Brain Tumor Institute.
According to the Central Brain Tumor Registry of the U.S., an estimated 69,720 new cases of brain and central nervous system tumors will be diagnosed in the United States this year. Inoperable glioma, cancer of the glial cells surrounding nerve tissue that can’t be safely surgically removed, is typically treated with radiation and chemotherapy.
The trial Yndestad joined combined a common glioma drug, temozolamide, with a PARP inhibitor, an enzyme-blocker that halts repairs to damaged DNA, killing the cancer cells.
Raizer explains that tests of the combination have shown that patients for whom temozolamide is no longer effective begin to respond to the drug again when the PARP inhibitor is added.
This proved to be the case for Yndestad.
“It worked exceedingly well. I didn’t really see much on his MRI any more,” Raizer said.
Yndestad’s treatment protocol is just one of more than a dozen clinical trials taking place at the Brain Tumor Institute.
Researchers there benefit from the ability to recruit top scientists and create collaborations between lab and clinic to gain insights on how tumors work and how to kill off cancer cells.
“We can develop drugs that might be more (targeted),” Raizer explains.
Thanks to ongoing funding efforts, particularly the annual Minds Matter dinner fundraiser, the institute has been able to increase research and expand services to patients that include the care of psycho-social and economic issues.
Now they have a social worker on staff and hope to continue finding new ways to improve patients’ quality of life during clinical treatment.
For those facing a brain tumor diagnosis, the Yndestads emphasize the need to learn about the options — particularly if there may be a new treatment available in a setting like the Brain Tumor Institute.
“If we hadn’t researched it, we wouldn’t be with Dr. Raizer,” said Kevin’s mom, Laurie. “You need to ask questions. You need to be your own advocate.”
Yndestad, in remission from the cancer, continues his study of business at DePaul, where he hopes to graduate next spring.
And he’s as busy as ever, between classes, regular exercise at a rehab center, and volunteering with multiple organizations.
His advice for those facing cancer: “Stay positive. Enjoy your life.”
As for working with Yndestad, Raizer says, “It’s been great. He’s become much more spunky over the last year as he returns to his old self.”