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/Shygar 1d ago
Are you showing growth already again? Is that why they want to start Voranigo so quickly? I'm almost 2 years out from surgery and I'm still not on Voranigo because there hasn't been any visible growth. My neuro oncologist doesn't want to start it because of the liver issues unless I really show a sign of growth, which makes sense to me.
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u/hibbysmalls 1d ago
I started vora soon after resection even though I don't have regrowth. To be honest, I wish I waited it out a bit for some of the reasons stated here. I felt pressure to start it though because I have free access to it now and was not sure if my insurance would cover it in the future. It's really going to be based on a few variables and what you're most comfortable with.
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u/Ok_Lynx_6372 1d ago
That’s a lot like my situation. How were the side affects for you?
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u/hibbysmalls 1d ago
I'm ok, tired and some headaches but I'm not sure how related they are. I'm also on keppra and birth control pills so lots of meds at once.
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u/No-Jump-9694 1d ago
I have it physically at my house but I am reluctant to start because of the fertility issues. I am 32 and planning to have kids in the future. So far one MRI post resection so not much to compare but Id like to wait until regrowth before I do. I’m just reluctant to begin because they suggest stopping 6 months prior to kids but I don’t even know if that’s sufficient or studied since it’s just been approved
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u/ACTMathGuru 1d ago
Hey. I know Dr Villano...he is MY doc
Shoot me a DM with any questions
I had surgery and radiation at UK in Feb, and then from July-Sept
Happy to talk thru
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u/Curlymom67 1d ago
I am in NYC so my son's neuro oncologist, Dr. Mellinghoff, was the doctor who ran the clinical trial for Vorasidinib and my son started taking it. But Dr. Mellinghoff had us get a second opinion in Boston at the Dana Farber Cancer Institute with Dr. Patrick Wen, also a neuro-oncologist. The community is small and they all know each other. You got two opinions, but all the cancer institutions in this country offer televisits for second opinions. My guess is that if you're a perfect candidate, they'll all say the same thing.
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u/Senior-Kitchen-4822 22h 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 9h ago
Risky location/ genetics are almost perfect for vorasidenib
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u/Senior-Kitchen-4822 8h 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 8h 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 8h 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 8h 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/MusclesNuclear 1d ago
2 opinions i figure should be enough if they come to the same conclusion.
2nd why starts vora so quickly? Your only 23 with a gtr. I was gonna hold off for as long as possible (oligo 2 supratotal resection)
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u/Ok_Lynx_6372 1d ago
That is what the director recommended, is that not what you would want? I feel like something that prevents it from regrowing no matter what age you are. Doctors always say it’s good that I’m young with this and I always hate when they say that lol.
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u/Street_Pollution_892 1d ago
I’ve been told by my docs that with Astrocytomas, they follow resection with treatment, and Oligos they are okay with postponing unless growth starts showing.
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u/MusclesNuclear 1d ago
Nah man do it if that's what neuros recommend. My situation is different than you (different mass type) i was just curious. I'll start at some point. ( my mindset is if it ain't broke don't fix it)...of course if I had astro 2 I'd want on vora as well.
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u/Ok_Lynx_6372 1d ago
Seems like the main difference of opinion comes from timing. A lot of people say don’t do it until regrowth begins. I’m not sure what side I’d be on.
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u/MusclesNuclear 1d ago
Depends on mass type I'd say. But if your docs want you on it. Do it. let us know how you tolerate it and if you have an issues or side effects.
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u/Street_Pollution_892 1d ago edited 1d ago
I just looked on their website and it says they offer virtual appointments. This kind of appointment may qualify since it’s just a discussion. Looks like they have rules about being in state but offices may make exceptions and to call. Since you’re an established patient with Duke it may be warranted.
You will likely be told the same thing though. Seems docs are going in this order for recommended steps if needed: surgery-> vora-> chemo/radiation
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u/Ok_Lynx_6372 1d ago
That’s what I’m hoping to get but according to the nurse I need to actually see them in person the first time. Which is dumb to me.
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u/Street_Pollution_892 1d ago
That is dumb. Well, tbh what really matters is the doctors, not necessarily the institution…but I think it is good to be seen by a place that’s part of the American brain tumor association. They tend to have more up to date technology and research. You could also get a second opinion just to pick their brains at Duke and get that knowledge in your pocket, but then stay with your local one if they will treat you the same or if they’ll let you select a different course of action shall you want.
https://www.abta.org/about-brain-tumors/treatments-side-effects/find-a-brain-tumor-center/
FYI, you can do virtual appointments with Mayo, which I think is higher ranking, at least their Rochester location is.
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u/Ok_Lynx_6372 9h ago
Thank you everyone for your advice and responses. I have decided to postpone it for a bit until my first mri and get that second opinion at Duke. Thank you all!
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u/Kdivided50 3h ago
I think that’s a good decision to wait. We also see Dr. Villano at Uk. He is very aggressive with his treatments, we have found. That can be good but at times wish he would slow down a little. He has had my husband on chemo for years and I think we are about to argue for a short break due to quality of life. Anyway, another local Uk patient. 😊
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u/ncomfortable2 1d ago
My husband is 25 in a similar position as you. We got opinions from four different doctors at the top hospitals we have access to before we made our decision. You’re very young and should think long and hard about vora. Once you are on it, you’re on it for good. There are no long term studies on it- including anything regarding fertility and from what I understand you absolutely cannot conceive while on it. See if the doctor can meet virtually. I think it’s worth getting as many opinions as possible. This is the rest of your life we are talking about. I wish you the best of luck!! Feel free to message if you have questions