r/braincancer • u/Skelux • 8d ago
Leaning Toward No Further Treatment
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.
10
u/drinkinsweettea 7d ago
I can't speak on the rest I am not completely sure where my tumor was in detail & my grade was probably a tad bit higher at 3 full blown GBM. I was a scrawny 23yr old doing a year of temzolomide & 6 weeks radiation. My only personal side effects was I could practically smell anything within a miles radius & tomatoes tasted like metal. Didn't stop me from eating salsa at every chance, however. I fully understand the apprehensive feelings with taking any chemotherapy, & my experiences are my own, but I hope reading personal accounts will help you feel comfortable, no matter your decision. Any & all treatment choices are yours alone that's the beauty of bodily autonomy.