A note of appreciation for Dr. Winer from a member of the Lost Regiment of HER2's

[AlaskaAngel]

This forum is not a place for one-on-one exchanges with busy doctors and researchers. Nonetheless, since I don't hesitate to voice my concerns I do want to publicly voice my appreciation as well.

About a year ago today I sat in a restaurant in-between medical appointments, trying very hard to hear an telephone conference where Dr. Winer spoke. At that time he said that there might be an upcoming clinical trial offered to all the HER2 positives who were left in the dust by virtue of being "too far out from original treatment", and generally not recommended to get Herceptin.

Today I attended the annual telephone conference Cancercare provided as an update for the latest SABCS info, with Dr. Winer and Dr. Grana. Although the Seattle site for the TEACH clinical trial has not yet opened and I may or may not end up in the trial, I want to thank Dr. Winer for his efforts in remembering the many years of HER2 positives who have not had the benefit of Herceptin, including the years of those who were never even tested for it.

Best wishes to all for the holiday season,

AlaskaAngel

[Joannie]

Alaska Angel:

I sure would love to be in the "loop" if this does happen. As you know, I'm in a very similar situation as you. I would give anything to be considered for late herceptin.
Please keep me posted!
Thanks,
Joannie

[AlaskaAngel]

Joanie, even though the oncs I consulted about getting late Herceptin didn't favor me getting it, at least one was reluctantly willing to prescribe it "off-label" for me -- so you probably could find a way to get it "off-label" as others in our situation here have done. But the question has been whether or not getting Herceptin "late" does any or much overall good for our group, since as a group we were excluded from the Herceptin trial and as well there can be the disadvantage of cardiac toxicity with it.

The TEACH trial is for those who are NED and confirmed strongly HER2 positive and who never have had Herceptin, and it is a trial with participants getting either lapatinib (Tykerb), or a placebo.


http://www.clinicaltrials.gov/ct/show/NCT00374322

Hope that helps...

AlaskaAngel