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Old 06-11-2005, 12:55 PM   #1
AlaskaAngel
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The recent Herceptin trial outcomes certainly raised more questions. What I want to understand is why there is lots of open discussion about how those at early stages who have never been treated can benefit, and there is lots of discussion about how those with mets can benefit, but so far there is dark, repressive silence from oncologists about this question:

"What approach is being taken in regard to establishing better clinical data about how the use of Herceptin affects those who have had chemo without Herceptin and who are currently NED?"

To me if the results of the clinical trials for Herceptin use for early bc clearly indicate a significantly lower recurrence rate, then logically those HER2++'s who are still alive and who have never had Herceptin are going to continue having a significantly higher recurrence rate. So why is there not discussion about clinical trials for those who have been treated but have not received Herceptin?

I know that one concern is cardiac toxicity. I know that there are lifetime limits on the amount of Adriamycin one can have, and also that some people who are HER2+++ and who have a low ejection fraction may not be able to tolerate more chemo-in-combination-with-Herceptin.

But what about the possibility of a clinical trial giving one combined dose, or 2 combined, dose-dense doses to those who have a good ejection fraction/MUGA or echo to see if early stage bc survivors who are NED end up reducing their recurrence rate?

(I do know it probably means losing hair again. I still ask.)

I have to also be very honest here about other aspects of being HER2/neu that are part of the breast cancer picture as a whole that we all are part of. A major aspect of the current HER2/neu confusion is unfortunately due to the lack of open discussion about HER2/neu all along with many of those who have breast cancer.

I am not raising rabble here. I am just asking that those who know the most about oncology try harder to avoid continuing to make that mistake.
It is up to oncologists to see our questions not as something to avoid answering, but as an opportunity for maintaining (or restoring) trust with HER2+++ patients who went through the nastiness of Adriamcyin without Herceptin at the advice of their oncologists; patients whose cancers were not even tested to find out whether they are HER2+++; patients who were never told what their HER2 status is or even why it could be important to know.

If oncologists truly don't know whether Herceptin is beneficial to those who have already completed chemotherapy without it, or how much benefit it would have for us, then at a bare minimum they should at least communicate with us about what they are actively doing about that to get better answers for us.

(I would like to at least know they don't just assume--or even worse, hope--that we are all dead, which is what their silence is saying to me.)

Respectfully,

AlaskaAngel
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