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Chelee · 10-26-2009, 11:37 PM

Hi Jackie, There are so many of us on here I know it's hard to keep track of who said what? But I just wanted to make clear that Dr. Slamon did not tell me that. We never discussed if there were any benefits to taking herceptin past a year. Someone else must of said that.

I sure know I wanted to stay on Herceptin when my yr came to an end...I asked my onc and the COH onc if I could take it for at least 2 yrs? But they both said there were no studies to say 2 yrs was better then one. It's interesting that once stage IV they will let us stay on it forever. (That implies to me that they do know it works in most...not all cases.) Since it does work, it's a shame so many are taken off it after their yr is up. I really believe I would of remained stage III if I could of stayed on it. Of course I'll never know that for sure. (Herceptin is an expensive maintenance drug which makes me think that's why it's only given for a yrs time if not stage IV?) With the insurance companies the way they are I can't help but wonder? Its one of those things that make you go....Hummmm?

Chelee

10-26-2009, 11:37 PM	#10
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: 3 years + on Herceptin, Why Hi Jackie, There are so many of us on here I know it's hard to keep track of who said what? But I just wanted to make clear that Dr. Slamon did not tell me that. We never discussed if there were any benefits to taking herceptin past a year. Someone else must of said that. I sure know I wanted to stay on Herceptin when my yr came to an end...I asked my onc and the COH onc if I could take it for at least 2 yrs? But they both said there were no studies to say 2 yrs was better then one. It's interesting that once stage IV they will let us stay on it forever. (That implies to me that they do know it works in most...not all cases.) Since it does work, it's a shame so many are taken off it after their yr is up. I really believe I would of remained stage III if I could of stayed on it. Of course I'll never know that for sure. (Herceptin is an expensive maintenance drug which makes me think that's why it's only given for a yrs time if not stage IV?) With the insurance companies the way they are I can't help but wonder? Its one of those things that make you go....Hummmm? 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.