[CourtneyL]

Wow, I am overwhelmed by the number of incredibly thoughtful and helpful responses. This really is the best support group on the web - and the most well-informed. I knew I could count on you for some deep analysis. Let's see if I can address most of your questions, comments.

Rich - yes, I am dealing with bone-only disease at this point. The brain, lung and liver involvement has completely resolved. Victory numbers 1, 2 and 3! Now we're just working on victory number 4. And yes, the vaccine does include GM-CSF to help improve the immune response. I can send anyone who is interested the exact trial protocol.

Darlene - I totally agree. I'm not usually a "standard of care" gal myself but in this case, I am inclined to agree. For what its worth, my alk pho and calcium levels are both in the normal range.

To answer your question, Laurel, and address your recommendation Elaine, I don't think these vaccines are robust enough to really handle lots of active disease. I think their real benefit comes from being able to ward off new disease and new progression. But I am not certain on this. I need to talk with Dr. Salazar to see if she thinks it is in the realm of possibility that the t-cells could be an effective treatment. I don't necessarily like the idea of taking a gamble. The odds are pretty good that a switch to Herceptin/Navelbine while taking a break from the trial would knock back some of these bone mets. So Darlene, CLTann and Sarah - I totally see why you are of the opinion that chemo is the way to go for now. And Lori, yes, I'd be able to hop back on the trial after a 3-week wash out period whenever we decided to stop the Navelbine. Chrisy - yes, I am really interested in what Dr. Salazar has to say. As she is not my primary onc, I'm expecting she'll say "its up to you". This is what she told a friend of mine in a similar situation.

But this does make me wonder why my onc is recommending that I press on with the trial. I think I know why. I think the reason my onc isn't recommending systemic therapy in the interim is because of toxicity issues. We talk about this being a marathon and not wanting to burn through our chemo options to quickly if we don't really need to. On the scale of seriousness, bone mets are lower than brain, lung or liver. He has confidence that a switch from Zometa to Denosumab for my "osteoporosis", with continued Herceptin, and now t-cells, may just be enough to contain the beast.

Steph - I'm currently on Herceptin and Zometa as I participate in the trial. No chemo allowed. However, as I mentioned, I can postpone the t-cell portion indefinitely since they are frozen and not going anywhere. Another thought I had, in addition to switching to Denosumab for my "osteoporosis" is to add Tykerb back in. But I progressed on Tykerb last year so I'm not sure if it would have any clinical benefit. Is it possible for a drug to work again if you progressed on it previously?

Brenda - Excellent suggestion to see a rad onc and get a consult. A part of me is not totally convinced that all of these are active bone mets. Would an MRI or bone scan be able to tell us more? Not crazy about the idea of a biopsy. And I'm trying to limit my radiation exposure (again, this is a marathon) so I don't really want to get a CT.

Weighing all of your wonderful advice, here is what I think I am going to do - (1) ask for a rad onc consult; (2) ask both Salazar and my onc which route they would choose and why (after they've spoken with each other sometime today). And I'll go from there. I know I am luck to be having these options at all and I am sorry to sound like a whiny baby.

And, yes, Marcia I have thought of paying Dr. Slamon a visit. He's in my back pocket arsenal and hopefully I never have to see him but nice to know that he's close by.

Thank you all SO much for your helpful advice. If you ever find yourself in San Francisco, I would LOVE to take you out to lunch and thank you personally for your support and love. I'll keep you posted as this saga unfolds. Stay tuned...