first post here... my brother was dx 2/15/08 GBM, surgery, imrt radiation/temodar at Johns Hopkins.
I've been browsing around this board and finding great info and support (big big thanks to all :-)
I have yet to see much chat about treatment at Hopkins. My brother + family have been really pleased with the treatment he's gotten there. And he's come through radiation really well and w/minimal symptoms. He's relatively young (40s), strong and really high-functioning... wants to get back to work asap.
However in the course of our research, we've been scouring the Web for current info on Ben Williams related (cocktail) approaches/recommendations. And we've become quite interested in Duke.
If anyone can provide some insight on how and why they've gone off-label, done clinical trials, etc. And what results they've gotten. Especially as regards the 'individually customized' regimens I've heard people are getting at Duke. How readily do they go off-label there? They seem to be focused on recurrence there and how to handle it in an innovative way... true?
Thanks in advance for your thoughtful replies, and be well, all.