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Lyn I wouldn't get too bummed out on this. I believe long term means anything over a year. She said that to get Herceptin for anything other then for stage 4 needs to be done through a trial and then its for a year. You are doing well and NED that is the main thing. Everyone is different with these drugs. I had 44 Herceptin treatments and with the recurrence of skin mets it was felt that it was not working and he said lets stop it and save it for later. He said where treatment options for IBC is so limited no need to use it now if we don't have to. I have heard lots of positive from this board about Herceptin. That was a question I did have would Herceptin prevent it from going to the organs or bones. My oncologist said no one knows, the other one said there is no data that shows it will do that. She said that may change in another 3 or 4 years. I had a bil lateral mastectomy in 2002 with 44 of 45 nodes pos. hormonal neg. no clear margins. It is my understanding clear margins are not obtainable with IBC because it is a lymphatic disease so my surgeon told me! It is interesting and I am always open to what others have to say about this disease. Thank you reponding and hope you can hold onto the NED forever!! Hugs, Sandy
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