Help for someone on the newcomers forum please.

[Chelee]

We have someone new that posted on the newcomers forum asking, "When is enough, enough"? She is talking about taking herceptin. Here is her post. Maybe you long time herceptin gals could help her out.
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when is enough, enough?
I have been on herseptin for over a year. As of my last PET scan, there are no tumors visible. My doctor is stumpted as to what to do with me. He says I am very unique because he has never seen a patient with 100% remission who has had HER2 positive stage IV breast cancer. He wants me to stay on the herseptin "until the cows come home". Since I don't have any cows, that may be a long time. I was wondering is there anybody out there who has had 100% remission and went off treatment?
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Chelee

[Rich66]

Ha! What a terrific dilemma! What side effects with the herceptin?

[Lori R]

I am not far enough out to provide first hand experience in regards to transitioning off of Herceptin. I did want to pass along my Onc's perspective.

I was diagnosed a year ago. Completed Chemo in March of this year 2008. My year of herceptin (I received herceptin at the same time as my Chemo) would have finished this week.

I am fortunate to be in remission. I like the term that members of the board use NED (no evidence of disease). It sort of acknowledges that searching for evidence remains an unfortunate but real part of our new life experience.

My Onc plans to keep me on herceptin indefinately. I am thankful for that perspective and plan to receive a herceptin infusion once every 3 weeks for a long long time. It is such a strange feeling to not fully know what party is going on inside of your body. "Something" is working for now and I'll ride this winning horse as far as I can.

Side effects for me have been minimal. The biggest one that I am currently blaming on herceptin is that my hair hasn't really returned. I might be blaming the wrong chemical. My lack of hair could be the result of the taxotere.

Hope this provides a little insight