[kk1]

Hi Kim;

It's is so great to hear from you and that you are doing well. I just got back from a great trip to Tuscany and read you pm. This is a great thread you started and I'd like to add a few thoughts.

Steph's comment that you need a complete re-staging prior to ceasing Herceptin is right on target. A few years ago my Onc started the discussion that we should start thinking about maybe stopping H since I had been NED for several years. We started by being flexible on when I came for treatment. Basically come in every three weeks unless I had a conflict with travel or work. Often I was only coming in every 5-6 weeks, we kept scaning every 6 months and doing the CTC's every 6-8 weeks. All seemed to be going well after another year so we decided to stop the H completely--but before doing so he wanted to do a complete restaging will all the various scans, CT/PET top to bottom, brain MRI, bone scan, heart ect. Several of my other doc's thought all this testing was over kill but he said for both of our peace of mind he wanted to make sure we looked under all the rocks. Indeed even though both my CTC's and serum were low they found a small regrowth of what we believe was the original lesion in my liver so I never went off. I think it must have been growing very slowly and finally got large enough to just barely show up on the PET/CT scans. I got back to NED again with a liver resection and continued H and and AI only. The decision to not do any "nasty" chemo for this second reoccurence was based on the fact that the CTC's we low so we hoped that it was still localized. This NED lasted for another couple of years when the darn thing grew again in my liver with low CTC and serum. We added Tykerb/Xeloda to the H and I quickly regained NED. I doubt I will ever stop H, while I do get reoccurences I think the H is slowing it down and 6 months scan lets us know when/if we need to take out a bat and slap it down, while the CTC's tells us how hard we need to swing and how big of a bat. Kind of like a whack mole game.

With the current state of knowledge I don't think anyone can say with any certainly if you should or shouldn't go off. But for me my gut feeling from reading this board and my own experience is I would need 8-10 years of continous NED before I would consider stoping.

take care enjoy the fall leaves