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Dear Natalie:
I think this is the question that we all must answer in our own way and in our own time. I think you provided the answer in the last sentence of paragraph one. You said something like (sorry, it's not in front of me now) "I want to do everything I can to beat this."
I can empathize with what you must be going through, since I have travelled essentially the same road. In my case, however, I did not have three little girls at home. My son was a senior in high school at diagnosis. He still needed me badly, though. He is 22 now!
As I've mentioned here before, the doctors were not very optimistic in my case. They took this attitude to such extremes I didn't even know if I'd have a minute left to fight! I have had quite a few minutes. The minutes turned into months and by some miracle into years.
I came back fighting. Out with the ovaries, in with the Arimidex. At that time Arimidex was brand new. My Doctor said "do what you want". I networked, as you are doing and heard amazing things about Arimidex. Arimidex alone gave me several years.
When I recurred with 2 mets to brain I changed oncologists to gain access to Herceptin, which my former oncologist advised against. I had Gamma Knife. Herceptin + Arimidex still didn't make me feel safe and I began searching for trials. Sunday night I returned from Seattle having received the second vaccination out of a series of three. It's been a year and a half since my brain mets. My body still appears clear.
Weekly trips to UCSF helped emphasize the deadly seriousness of the foe. Over and over again this weekly pilgrimage proves to be a stiff innoculation against complacency. A newly made friend died. I too worry about auto-immune disease as well as heart toxicity, but I worry about HER 2 Neu positive breast cancer more.
HER 2 Neu is a clearly identified target. It is fueling your breast cancer. The Seattle group has not published their results yet, although I believe this is in the works. To advance to Phase II trials they were required to have documented success to receive NIH funding. It is my understanding that they provided this. These types of studies have been underway at the University of Washington for seven years.
This is how I decided to participate in the vaccine trial at U of WA. I too am afraid; I try and choose very thoughtfully what to be afraid of.
Mary
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