Leaning Toward No Further Treatment

[u/Skelux]

So the quick followup: basically everything I figured out by looking at my own scans was correct. It is speading along my insula, and is right up against the putaman - not real good.

I am faced with a tricky decision with no good answer. The surgeons want to book me in within a couple of weeks and scoop out what they can safely do - but considering the location in the insula, I might end up losing part of what makes me who I am. After that, they want to put me on TMZ+Radio. There is no way a scrawny underweight dude like me is going to tolerate that, I'll have to bail on it early for sure. And even if I somehow got through it all, my quality of life is ruined by stress and side effects, all for the sake of a few extra years overall survival.

I wanted to go on Vorasidenib, but they told me it still costs some kind of insane price (like 60k a month or something). I had been pretty sure Vora was already available under healthcare at a much more affordable price, but apparently not - unless the surgeon was wrong, and the oncologist says something different next week.

Overall, I am leaning toward the side that I never expected I would. Do nothing - no surgery, no meds, no radiation, no scans even. I want to feel like myself as long as possible, and treatment doesn't allow for that. It sacrifices my time and comfort just to buy slightly more time. It feels like I should instead just lull myself back into a state of denial and try to live whimsically as I have been for the past 4.5 years since my first surgery.

[u/seanclmn1]

I would not recommend that. Though it’s ultimately up to you, giving up this early feels premature to me.

[u/Timely_Chance1753 → u/seanclmn1]

I don't think so .it's high grade glioma .

[u/MusclesNuclear → u/Timely_Chance1753]

Oligo 2 isnt high grade.