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Hi Kim,
Congratulations on such a long time of NED! I was diagnosed at stage IV right off the bat. After 3 months of TCH, my scans showed NED. (That was in June 2007.) I continued with 3 more months of TCH, and I have been on Herceptin and Femara alone (with Zometa) ever since. I have only been NED on Herceptin alone for a bit over a year, so I have not yet had to face your wonderful dilemma. Although I am not absolutely sure, my impression is that my oncologist would continue the Herceptin as long as it was working and one's heart was doing OK. I believe that she has patients who have been on Herceptin alone for 4-6 years. You might have your oncologist contact her to get her opinion. She is an expert on Her2 positive disease. Her name is Dr. Hope Rugo, and she is at UCSF in San Francisco. The general number there is (415) 353-7070. Alternatively, Drs. Slamon, the one who discovered Herceptin, might be another good person to contact, as would Dr. Pegram.
I believe that both Christine and Andrea recently stopped their Herceptin treatments, but I think each of them were around 8 years out or so.
Good luck! I am encouraged by your success.
Best regards,
Jill
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