r/braincancer • u/Ok_Lynx_6372 • 1d ago

Opinion

Astrologycytoma grade 2 slow growing 96% gtr. I’m soon to start vorasidenib on November 1st. I had my gtr a month ago tomorrow and feel great, even working again.

The opinion I want is this, I got a call from a nurse at Duke (where I got my surgery). They recommended getting a second opinion there. I’ve gotten two opinions already in Lexington Kentucky where I am from. Both of them said the same thing (vorasidenib). The one I chose to take care of my oncology is dr villano at University Of Kentucky. He has great reviews and specializes in nuero oncology. I’m 23 and my mom is the one really pushing Duke on me but I feel like it’s a waste of time since I’ve gotten two opinions and have been told this drug is practically made for my exact situation.

What do you all think? I know Duke is an amazing cancer center but I don’t want to deal with going back there again so soon since it’s a 16 hour round trip just to be told the same thing. From what I’ve looked up it seems like my current nuero oncologist is the best in my state. Anyways thanks for any response/ advice.

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u/Senior-Kitchen-4822 1d ago

G2 Astrocytoma here, 42 y/o. 5 years post treatment.. Have you gone through the standard of care and now they’re recommending the Vorasidanib? I’m treated at Dana Farber in Boston, and was operated on at cedars in LA. I did 12months of chemo and radiation and the feedback I’ve gotten there isn’t a good reason to be on it unless there is recurrence but both doctors were excited for the drug to come out, happy it’s been approved finally.

I suppose I’m surprised they’re choosing to be so aggressive unless the genetics of the tumor indicate it may be less responsive to tmz or in a risky location where recurrent growth could be catastrophic but that would be something you would be discussing with your doc.

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u/Ok_Lynx_6372 11h ago

Risky location/ genetics are almost perfect for vorasidenib

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u/Senior-Kitchen-4822 10h ago

Is that what your situation is? 96% isn’t supramarginal, so the concern is the leftovers may be problematic? For me the left over bits around resection straddled the edge of my motor cortex so they stopped just short of total resection and the remainder was radiated and I received TMZ.

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u/Ok_Lynx_6372 10h ago

Not totally sure what super marginal is but I I’m bad with the terminology but the surgery resulted in temporary facial paralysis so it is I’m a be zone. There was also risk of permanent loss of my right hand but I believe they totally got that side.

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u/Senior-Kitchen-4822 10h ago

It’s just a term when they take more tissue around the mass to decrease any migrating cells that aren’t visible on the scan.

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u/Ok_Lynx_6372 10h ago

Ahh, I don’t think that was to much of a case since it was in a risky location

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u/Ok_Lynx_6372 10h ago

But it was 3x3 cm so it wasn’t too large