Hi Julie,
First off, I just wanted to say how sorry I am that you've had to find this board--but as you see you'll get lots of help here. Our kids were 13 and 5 when Rachel was diagnosed two years ago, so I know a little about some of the particular challenges you're facing.
I think it's probably clear from these posts, but I wanted to make sure: I really don't think you can get herceptin in a clinical trial at this point. Most (if not all) trials require that you enroll before you start chemo. The only exception I know of with herceptin is the HERA trial and that's only in Canada, Europe etc. but not the US. And they don't accept women from outside, even if you could travel.
But don't despair: LOADS of women get herceptin off-label now for just the stage of bc that you have. In fact, Marc Pegram, who's a leading bc researcher at UCLA has even said in interviews that he and his group have from time to time offered herceptin to women with larger tumors and/or multiple nodes. So, I'd quickly push your doc to reconsider (I can send you links to the Pegram interviews if you want, just email me at
melnick@babson.edu). If this doc says no, then switch and find one who will.
Genentech, makers of the drug, have a patient assistance program: they'll help you appeal IF your insurance turns you down (unlikely) and will cover the cost if you get turned down on third appeal and your household income is under 75,000. We found this all out "just in case" and then Rachel found a doc near us to give her the herceptin off-label. Never heard a peep about it from the insurance co.
Good luck,
Jeff