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

Chelee · 10-12-2010, 12:58 AM

DeenaH,
I'm still willing to do anything we can about this TDM-1 nightmare. If we are pro-active enough I believe we can make changes & speed this process up. There were so many of you here with great ideas...I thought we were off to a great start.
TDM-1 needs to be available for women with metastatic & earlier stage bc. I was looking forward to at least some more EAP sites..but we now know that's not going to happen either.

The ramifications from denying us access to TDM-1 is serious...it will cost some of us our lives. Why should women have to beat up their bodies first with all these toxic chemo combo's first to make the FDA happy. I'd sure like to get the ball rolling on this some how?

Jackie's idea is a good one. I've talked with Dr. Slamon and he is very geninue...he cares. He might be able to give us the best direction to go in? It's worth a try. I'm also open to Elaine's idea of a petition...and I know of another bc board where there are lots of women upset about this very same thing, & will gladly join in to sign petitions, write letters...or whatever it takes. I'd also like to "steal" Shelia's line that she used to get attention when she was fighting for Tykerb. She said to them, "I am dying to try this drug!" Perfect...gotta love it.

Remember the news on TDM-1 has been shown to work great as a 1st line therapy...this isn't just for metastatic bc...this is to benefit all of us.

Chelee

10-12-2010, 12:58 AM	#66
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: What can we do about the delay of TDM-1 DeenaH, I'm still willing to do anything we can about this TDM-1 nightmare. If we are pro-active enough I believe we can make changes & speed this process up. There were so many of you here with great ideas...I thought we were off to a great start. TDM-1 needs to be available for women with metastatic & earlier stage bc. I was looking forward to at least some more EAP sites..but we now know that's not going to happen either. The ramifications from denying us access to TDM-1 is serious...it will cost some of us our lives. Why should women have to beat up their bodies first with all these toxic chemo combo's first to make the FDA happy. I'd sure like to get the ball rolling on this some how? Jackie's idea is a good one. I've talked with Dr. Slamon and he is very geninue...he cares. He might be able to give us the best direction to go in? It's worth a try. I'm also open to Elaine's idea of a petition...and I know of another bc board where there are lots of women upset about this very same thing, & will gladly join in to sign petitions, write letters...or whatever it takes. I'd also like to "steal" Shelia's line that she used to get attention when she was fighting for Tykerb. She said to them, "I am dying to try this drug!" Perfect...gotta love it. Remember the news on TDM-1 has been shown to work great as a 1st line therapy...this isn't just for metastatic bc...this is to benefit all of us. 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; 10-12-2010 at 01:48 AM.. Reason: Corrected spelling.