The NCI's response to my inquiry on late adjvuant herceptin trails

[kristen8594]

Hi..

Well these posts seems to fit right into everything that I have been looking into.
Alaska....I seem to be in the same boat as you in getting late herceptin. I was looking into clinical trials to see if any offered late herceptin. In my mind I was thinking I would rather have it sooner rather than later. But you bring up a good point about other clinical trials not open if you have already received herceptin. This is boggling my mind. My onco said if I had more postive nodes than one, then she may start me on it. However with one positive node, she didn't think it likely or wise. I think I could persue it with her but I just don't know what is the right thing to do at this point. At the time of my dx 4/03 (inished treatment 12/03) I was not even informed of the potential dangers for being HER2+++ so at the time I didn't even inquire about the clinical trials offered. (I am still mad as heck about that, but trying to move on !)
If anything else comes up about clinical trial, I would love for you to share it with me.
Thanks
Kristen

[AlaskaAngel]

In terms of a clinical trial, it was mentioned on a Cancercare conference just after the San Antonio meeting that there likely will be clinical trials offered for us "sometime" in 2006, and I have heard it mentioned elsewhere as well. I think Robin has the right idea and writing the NIH is a good place to start and that is what I did too, and I would encourage you to also. The way things are, any of those who recur "late" will get Herceptin of course, but since Herceptin is now being given right off the bat to all the HER2's who are within 6 months from treatment, that doesn't make much sense to me. Why would their hearts be able to stand up to it better than ours would?

A.A.

[RobinP]

Hi AA, thanks for asking how Herceptin is going. It went okay during the infusion. I have some back pain which started a few days after the infusion I wonder if that is somthing like necrosis that is going on. LOL, if it keeps up I will definately have a scan done on my back.

I hope late herceptin trails actually get off the ground. I am concerned for the population of her2 breast cancer patients who have minimal knowledge available to them for the benefit of Herceptin and I ethically think that is unfair to leave them out clinical trails.