Your Health: A new drug shrinks tumors

If not treated, VHL is fatal.
Until last year, surgical removal of the tumors was the only treatment. But now, a newly approved therapy may help people with VHL avoid repeated, dangerous su
Published: Jan. 22, 2023 at 4:53 PM EST
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LANSING, Mich. (WILX) - Von Hippel-Lindau (VHL) disease is an inherited condition that puts people at higher risk of cancerous and benign tumors in multiple organs, including the kidneys, pancreas, spine, and brain. If not treated, VHL is fatal.

Until last year, surgical removal of the tumors was the only treatment. But now, a newly approved therapy may help people with VHL avoid repeated, dangerous surgeries.

From learning to play “Stairway to Heaven” by Led Zeppelin to planning her wedding, 33-year-old Ashley Colburn doesn’t step away from a challenge even though she’s been blind since she was 14.

“I’m in a category called NIL, which means absolutely nothing, zero vision, no light perception at all,” Colburn said. Colburn has VHL, which caused non-cancerous tumors to form in her retinas. She started showing additional symptoms in 2017.

“I felt ribbons of pain pulsing in the back of my neck when I stood up too fast,” she said.

It was more tumors, this time they were in her brain.

Brain surgery was followed by recovery and Ashley went on to life as a newlywed. Then, about 18 months ago, a sudden, familiar pounding in the back of her head.

Dr. Othon Iliopoulos, a medical oncologist at Mass. General Cancer Center, was about to schedule Ashley for another brain surgery when doctors learned a new drug designed to shrink VHL tumors was close to approval.

It’s called belzutifan, also known as welireg.

“We can treat, now, the patients and save them from having the craniotomy,” Dr. Iliopoulos said.

In August 2021, Ashley began taking three pills a day. Five weeks after she started, the drug shrunk her brain tumors by more than a third.

“It is clearly a game changer,” said Dr. Iliopoulos.

And for Ashley and her husband Patrick, clearly a life-changer.

Dr. Iliopoulos says of the 19 VHL patients he treated with the drug, all had tumor shrinkage.

Ashley says she’ll remain on the drug as long as it continues to keep her tumors from growing.

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