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Old 07-31-2012, 07:01 AM   #55
Rolepaul
Senior Member
 
Join Date: Jan 2012
Location: Boulder Colorado as of January 2013
Posts: 389
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

I am trying to help Eileen, Denise, and Ashley. This is getting frustrating. Is it time to get some push in the media? I made a first inquiry, now I need to move it up to the next level. How about getting some push from the group here with your DC politicians to get some movement? The doctors want to do it, the patients need it, but the paperwork to do it is tremendous. MD Anderson wants to get a multi-center study going, so I am going to be there on Friday to do the necessary part from the patient's side to get this going. I have a VP at Genentech/Roche that I might need the help of this group to put some pressure on. I will give him one more chance to do the right thing, then we group up or move it up a rung. Genentech/Roche made a lot of positive points with Pertuzumab approval, lets give them a shot to do the same with this approved drug and an approved method. I have to see what it takes to move this from "Compassionate Care, off label use" to "New indication". I still have a contact or two that I have not used yet. I heard Ashley in Nashville got approval. Time to lawyer on a few more doctors. The time to do IT Herceptin is now, not two to five years from now.

Ants can get elephants to move. This just have to act together. Lets be Ants.
Never give up.
I hate to lose.
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