My young (41) beautiful sister was diagnosed w GBM back in February 2012. They removed some of the tumor when they went in to biopsy, but since, it has been called an inoperable spot. She was doing well on Temodor and radiation until a few months ago. An MRI showed the tumor had progressed, and they immediately took her off The Temodor and put her on Avastin and something else. Initially things looked promising, tumor had shrunk, but because of her low platelets she has been unable to receive the "something else" drug (ill ask tomorrow what that is") and the MRI from this past week had shown regrowth. We know what the statistics are, so naturally we are all scrambling to find out what to do next. She is in NYC, and has been treated at Sloan Kettering.
My question is whether anyone has any knowledge or experience of a trial being done at the Long Island Brain Tumor Center? Apparently they are running a trial with a drug called AR-67, and my sister is considering joining. This is for patients with recurrent rumors, and the nice part is the treatment does not include chemo, although I think she would still get Avasin. Any insight into this facility or trial would be appreciated.
Would anyone suggest Duke? I know they are leaders in this field, but my sister has lost use of her right arm and leg (and has 4 kids) so traveling is difficult. Would anyone suggest that with the medical advantages there it would be worth the difficult experience of going?
Just trying to help her decide which would be her next best course of action. Thank you to everyone in this community. My prayers are with each of you tonight.