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What makes the most sense to me is that there should be full, open discussion about how to deal with the HER2+++'s who are currently NED and have never had Herceptin -- whether or not it is "too late" to combine it with Adriamycin. And if anyone at all can find that kind of discussion happening anywhere and can refer to me to it, that would help.
Naturally, since the oncologists are professionals in this area and I am not, I had thought that once they sat down together and looked at the newest information, there would be some effort made to help us to understand that they haven't forgotten about us entirely -- since "whoever it is" that hasn't received Herceptin as first-line treatment is in the group who is at significantly higher risk for recurrence.
The only info out there at present that I have been able to find is anecdotal, from those who have seen their oncologist (many are on a schedule and haven't seen one yet, and it often takes months to book an appointment). I think this is VERY unhealthy.
Scott, in terms of considering various options for Herceptin, how do they know without having offered a clinical trial for people who have already had one chemo regimen, how Herceptin-with-chemo compares to putting those people on Herceptin indefinitely? Consdering the ongoing costs, as well as any cumulative effect of Herceptin anyway on those who have already had Adriamycin?
I know Herceptin doesn't work for all HER2+++'s, also.
Wouldn't some open discussion of options for those HER2+++'s who are NED make better sense in terms of building better mutual understanding for all of us?
A.A.
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