View Single Post
Old 07-10-2012, 08:13 PM   #4
jml
Senior Member
 
jml's Avatar
 
Join Date: Dec 2006
Posts: 415
Re: update and query

I really hope Hema gets TDM1 and responds quickly and positively!
I was enrolled in the TDM1 Extended Access Program in August 2010 but was only open for a short while before it was shut down.I flew (day trips) from Atlanta to Nashville to get my infusions.
My disease had progressed the furtherst it had ever been, unresponsive to 2 previous regimens & I was really not doing well - weak, lost so much weight and my mom came from Hawaii to stay & watch over me.
I responded immeditely, and after the 1st infusion an intramuscular met, just below my belly button melted away, in addition to the disease that had spread throughout multiple retroperitoneal nodes(belly) and I'm sure other places.
I had great response for 6 months, then a PET scan discovered 2 small lung lesions, so I was booted out. I was devastated, as throughout my decade with this disease I've had lung "things" pop up and resolve, inconsistent with how the rest of my body was responding.
Since then, the disease that the TDM1 knocked back has not reappeared (YAY), though as you know I have had other recurrences. But the TDM1 did an amazing job decreasing my tumor load and I anxiously await it's approval so I can have it in my medicine cabinet.
After 7 bed-ridden months, TDM1 got me back on my feet, back to travel, back to work and back to independence.
I think it is such a travesty that the FDA pulled the expedited approval in spite of how well many have responded. I can only hope that it will be approved soon, early 2013, and without the crazy confusion & restrictions that access to Pertuzumab has come with.
Crossing fingers & saying prayers for Hema!

Keep the Faith,

Jessica
jml is offline   Reply With Quote