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Chelee · 12-08-2009, 05:50 PM

Marilyn, There are a few ladies here that were on herceptin for years that stopped taking it. Two of the women are getting ready to leave for the ASCO conference San Antonio. Or they may have left already...I'm not sure? So they might not see your message for a day or two. But one is Steph, and Christine. (The Her2 board's founder.)

I also think Andi was on Herceptin...or Vitamin H as she calls it for 9 to 10 yrs when she went off it? So far I believe they are all doing fine. I can only imagine how you felt when you onc hit you with that question. I admire the women here that have made that choice...for me personally...it would not be an easy one. If I was NED and my ECHO'S remained good...I am not sure I could bring myself to discontinue it? Very hard decision. But hang in there...I am sure these ladies will see your message and reply.

By the way...BIG CONGRATULATIONS on being 8 yrs out and NED.

That's so encouraging, and just plain old wonderful.

Chelee

12-08-2009, 05:50 PM	#2
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Discontinuing long term Herceptin Marilyn, There are a few ladies here that were on herceptin for years that stopped taking it. Two of the women are getting ready to leave for the ASCO conference San Antonio. Or they may have left already...I'm not sure? So they might not see your message for a day or two. But one is Steph, and Christine. (The Her2 board's founder.) I also think Andi was on Herceptin...or Vitamin H as she calls it for 9 to 10 yrs when she went off it? So far I believe they are all doing fine. I can only imagine how you felt when you onc hit you with that question. I admire the women here that have made that choice...for me personally...it would not be an easy one. If I was NED and my ECHO'S remained good...I am not sure I could bring myself to discontinue it? Very hard decision. But hang in there...I am sure these ladies will see your message and reply. By the way...BIG CONGRATULATIONS on being 8 yrs out and NED. That's so encouraging, and just plain old wonderful. 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.