HER2 Support Group Forums - View Single Post - What can we do about the delay of TDM-1

Chelee · 09-04-2010, 11:51 PM

Barbara,
I would love to do something about this T-DM1 nightmare. Sign me up...lets do whatever it takes to be heard. Waiting till 2012 is unacceptable! There are so many women that were depending on this drug...myself included. We need to find a way to get the ball rolling--so lets all put our heads together and be as pro-active as possible.

Nancy...AMEN to everything you said...I couldn't of said it better myself! I'm not sure who we need to direct our letters too...but I do not believe for one minute it's the White House. Now Elaine might be on to something? The FDA might be one good place to start. Lets figure this out and get going on it...T-DM1 has already proven to be a life saver so we need to make sure it's available to all that need it asap. Any other ideas on who we write too please jump in here. (Thanks Barbara for bringing this issue back up to the top.)

Chelee

09-04-2010, 11:51 PM	#5
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: What can we do about the delay of TDM-1 Barbara, I would love to do something about this T-DM1 nightmare. Sign me up...lets do whatever it takes to be heard. Waiting till 2012 is unacceptable! There are so many women that were depending on this drug...myself included. We need to find a way to get the ball rolling--so lets all put our heads together and be as pro-active as possible. Nancy...AMEN to everything you said...I couldn't of said it better myself! I'm not sure who we need to direct our letters too...but I do not believe for one minute it's the White House. Now Elaine might be on to something? The FDA might be one good place to start. Lets figure this out and get going on it...T-DM1 has already proven to be a life saver so we need to make sure it's available to all that need it asap. Any other ideas on who we write too please jump in here. (Thanks Barbara for bringing this issue back up to the top.) Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options. Last edited by Chelee; 09-05-2010 at 12:55 AM..