3 Weeks on Braf trial for brain mets and not a responder

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4/13/2011 5:20pm
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My dad went to get scanned after only being on the braf trial for brain mets at Vanderbilt and all of his tumors grew- he has some in his lungs, brain, neck and pelvis.  I'm just so surprised that he didn't respond at all.  He was feeling so much better a week after he started.  How can that be?  

So now they've admitted him to the hospital because his brain mets have grown substantially and caused him to have weakness on the left side of his body (this all happened within the last 2 days and thank God he had just arrived at Vandy because the doctors said he could've died at any minute with all the pressure from the tumors in his brain.  He is getting steroids now for the brain mets and they are deciding on gamma knife or wbr-starting tomorrow.  Obviously he's out of the trial.   Just sucks.  We were so excited when he finally got in it and it didn't even work.  

So after the brain is taken care of it's either ipi (if he has time to wait for it to work) or another trial.  Thankfully Vandy has several.  He failed interferon, IL-2 and now braf.  

I'm just really upset for him right now.

Im thinking of you and your dad.  Hang in there, I know how upsetting this is and hope he can find a treatment that works. He is lucky to have you looking out for him.   Cate

Try to stay positive, and hang in there.  He is VERY lucky to have a daughter like you who cares so much!

I was in a similar situation with my father. He didn't have any mets/tumors in his brain but that was the only part of his body that was clear. In fact today is exactly one year since his first surgery. He also failed interferon and IL-2, he had just started a clinical trail and recieved two treatments of ipi. Try to stay positive, Good Luck.

Amber

NEVER GIVE UP!