Medical Moment: A new treatment for shrinking VHL tumors

(WNDU) - VHL disease is an inherited condition. It puts people at higher risk of cancerous and benign tumors in multiple organs, including the kidneys, spine, and brain.

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 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 explained.

Ashley has the genetic condition Von Hippel-Lindau disease, or VHL, which caused non-cancerous tumors to form in her retinas. VHL also means a high risk of other tumors. Ashley started showing additional symptoms in 2017.

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

More tumors, this time, 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.

Doctor Iliopoulos was about to schedule Ashley for another brain surgery when they learned that a new drug designed to shrink VHL tumors was close to FDA-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,” Dr. Iliopoulos said.

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

Of the 19 VHL patients treated with the drug, all experienced tumor shrinkage. Ashley says she’ll remain on the drug as long as it continues to keep her tumors from returning.

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