HER2 Support Group Forums - View Single Post - Access to T DM-1

phil · 10-21-2011, 07:21 AM

Thanks Schoonder. Several of you have e-mailed me , asking if Lorraine got to switch tx. to Boston . She did NOT !! Genentech decided to close access , and with it the flexible tx. plan we had been working with in Va. That plan reduced the dose , because of low platelets. The cancer shrank more, and plats , still low , stabilized over the past 3 months. Now Genetech says Lorraine must meet " new criteria " for a " new study ". We were shocked. It had been portrayed as a simple roll-over , to a " maintenance " study. And Farber , the t dm-1 trial hospital in Boston, said that since it wasnt a full-fledged trial we could get treated by our doc at MGH. But she has never handled t dm-1. Partners IRB, which owns MGH, got involved. And we are stuck between the two. First the FDA, now this ! So, we have met w/ our Congressional reps, and had to go back to Va. this week. To stay in the flexible plan that Gen. and Va. worked out.
The south shore express article you included as a link, is better on paper than on-line. It was shrunk to fit on-line.
A few in-accuracies, and the pictures should be captioned : Before T DM-1 ( on adria last Nov., w/ our youngest grand dau. ), and After T DM-1 ( last week ). Those pics are worth the whole article !!
We fight on , David fighting Three Goliaths !

10-21-2011, 07:21 AM	#43
phil Senior Member Join Date: Nov 2010 Posts: 393	Re: Access to T DM-1 Thanks Schoonder. Several of you have e-mailed me , asking if Lorraine got to switch tx. to Boston . She did NOT !! Genentech decided to close access , and with it the flexible tx. plan we had been working with in Va. That plan reduced the dose , because of low platelets. The cancer shrank more, and plats , still low , stabilized over the past 3 months. Now Genetech says Lorraine must meet " new criteria " for a " new study ". We were shocked. It had been portrayed as a simple roll-over , to a " maintenance " study. And Farber , the t dm-1 trial hospital in Boston, said that since it wasnt a full-fledged trial we could get treated by our doc at MGH. But she has never handled t dm-1. Partners IRB, which owns MGH, got involved. And we are stuck between the two. First the FDA, now this ! So, we have met w/ our Congressional reps, and had to go back to Va. this week. To stay in the flexible plan that Gen. and Va. worked out. The south shore express article you included as a link, is better on paper than on-line. It was shrunk to fit on-line. A few in-accuracies, and the pictures should be captioned : Before T DM-1 ( on adria last Nov., w/ our youngest grand dau. ), and After T DM-1 ( last week ). Those pics are worth the whole article !! We fight on , David fighting Three Goliaths !