HER2 Support Group Forums - View Single Post - I Didn't Get T-DM1

Chelee · 05-11-2011, 03:11 AM

Karen,
I am so sorry you didn't get the T-DM1 like you had hoped too. Quite a while ago I went to two different places and was offered this same trial. I let both places know my only interest was T-DM1. I was willing to drive to these other cancer centers for the TDM1...but like you If I did get placed on the T/X arm of the trial there would be no reason to drive that far for those drugs. I can get them at my cancer center. So I can just imagine how disappointed you are.

I didn't like the idea I'd be off Herceptin too if I got the T/X side. Then the deal breaker for me was if I was lucky enough to get placed on T-DM1 and it did not work for me there is was no cross- over. Most trials you can always cross over if there is progression.

So are you going to try the Tykerb/Xeloda at your center, or look into other options? I know your main concern must be waiting for the wash-out period to be over. I'm sure your anxious to get started on something. You have lots of options left and I know your onc will find something that works well for you. Hang in there. Keep us updated.

Chelee

05-11-2011, 03:11 AM	#10
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: I Didn't Get T-DM1 Karen, I am so sorry you didn't get the T-DM1 like you had hoped too. Quite a while ago I went to two different places and was offered this same trial. I let both places know my only interest was T-DM1. I was willing to drive to these other cancer centers for the TDM1...but like you If I did get placed on the T/X arm of the trial there would be no reason to drive that far for those drugs. I can get them at my cancer center. So I can just imagine how disappointed you are. I didn't like the idea I'd be off Herceptin too if I got the T/X side. Then the deal breaker for me was if I was lucky enough to get placed on T-DM1 and it did not work for me there is was no cross- over. Most trials you can always cross over if there is progression. So are you going to try the Tykerb/Xeloda at your center, or look into other options? I know your main concern must be waiting for the wash-out period to be over. I'm sure your anxious to get started on something. You have lots of options left and I know your onc will find something that works well for you. Hang in there. Keep us updated. 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.