Vorasidenib Offers Long-Term Control For Low-Grade Glioma
- Now 35, Pittsburgh-area resident, Sarah Geary was diagnosed with a type of brain tumor called a glioma at age 23 after she collapsed at work. After her first surgery, Sarah followed a “watch and wait” strategy, but her tumor came back after three years.
- She had a second surgery and continued with the watch and wait strategy until 2020, when she joined the Indigo clinical trial to test the targeted therapy vorasidenib (Voranigo).
- Vorasidenib was approved by the U.S. FDA in 2024 for some types of glioma with IDH1 and IDH2 mutations based on the trial results. It can be a “game-changing” option for eligible patients who wish to delay additional treatments, like radiation.
- Vorasidenib is oral, convenient, and taken at home. Young adult patients with residual or subtly growing IDH-mutant tumors are often good candidates.
Within a week and a half, Sarah had brain surgery to remove the tumor.
Read MoreSurgery Followed By ‘Watch & Wait’ For Glioma
When possible, the first treatment for glioma is surgery. After surgery, treatment can be continued with medication and radiation therapy. But for some people with low-grade tumors like Sarah, they can be monitored for any regrowth after surgery. This is a strategy called “watch and wait.”After her first treatment, Sarah and her care team opted for the watch-and-wait strategy. She had MRIs every other month to watch for signs of regrowth. Sarah remained cancer-free for three years, but by November 2016, the tumor had grown back and she needed another surgery.
“For the second surgery, they told me that I was going to be awake for part of it, just to make sure all the movement in my left side wasn’t going to be disrupted by the scraping they were doing inside my brain,” Sarah explains. “You just have to trust the doctors at that point, and be confident that they know what they’re doing. It was a wild experience.”
After her second surgery, Sarah again received regular MRIs as part of another watch-and-wait strategy, but this time she was more anxious. They prayed the cancer wouldn’t come back, because Sarah wasn’t a candidate for another surgery, and she knew there were some tumor cells left in her brain.
In 2020, another option became available — a targeted therapy.
Targeted Therapy With Vorasidenib
Sarah, who gets her cancer care at UPMC Hillman Cancer Center, was enrolled in the Indigo clinical trial, which was testing the first targeted therapy for glioma. Vorasidenib (Voranigo) was approved by the U.S. Food and Drug Administration (FDA) in 2024 for some types of glioma with IDH1 and IDH2 mutations based on the results of the Indigo trial.
“I’ve been on [vorasidenib] for five years this month, and it’s worked like a charm. I’ve had no grow-backs,” Sarah says. “I was excited to go on it because living day to day, not knowing if the tumor was going to grow back, was kind of nerve-racking. I’ve had some side effects, but nothing too major.”
WATCH: Lynton Daniel, diagnosed with a rare brain tumor since 2011, received a fighting chance with Vorasidenib.
Read More About Glioma And Vorasidenib
Coping With Vorasidenib’s Side Effects
Sarah’s main side effects of vorasidenib were related to low phosphorus levels.
“Low phosphorus levels make you not have an appetite and make you extremely sleepy. You just feel in a daze most days,” she explains.
On vorasidenib, Sarah received weekly blood tests, where they discovered that the source of her side effects had a simple solution. A phosphorus pill has returned Sarah’s levels to normal, and she is no longer experiencing fatigue and a reduced appetite.
The most common side effects of vorasidenib include:
- Fatigue
- Headache
- Musculoskeletal pain
- Diarrhea
- Nausea
- Seizure
WATCH: Joel Gendron, a father and brain tumor survivor, is sharing his journey after being diagnosed with a grade 2 glioma.
‘Be Patient’: Sarah’s Advice For Anyone Coping With Cancer Diagnosis & Treatment
Sarah’s advice for anyone diagnosed with cancer at any age is to be patient. “Things aren’t going to happen right away. You may not be cured right away. It may come back. You may have to do it again,” she says.
Sarah has leaned on her family, especially her mother, and her friends, after her diagnosis. She’s also found ways to be more present in her day-to-day and find a community through her work at a local coffee shop. She also likes to play video games and do puzzles to help her brain health. But finding her way back to the things she loved to do after her diagnosis and treatment was a challenge.
“Going back and being social like I was before was somewhat difficult,” Sarah says. “After a surgery that destroys your brain, you have to adjust to a new normal, and I’ve been coming back to being just as social as I was before. It took some time, but all good things take time.”
Questions To Ask Your Doctor
- Am I a candidate for vorasidenib?
- How will I be monitored while on vorasidenib?
- What side effects should I be aware of? And how are they typically managed?
- What happens if glioma returns while I’m on vorasidenib?
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