stage 2 her2/neu positive and ER positive

[Candace Howell]

Hello out there! It's so nice to know there is a her2/neu survivor board. However, I can't find much data on effective treatments for EARLY her2/neu. Because of the AMA/FDA monopoly, I don't qualify for herceptin yet. Thus, I am in the process of trying to decide whether or not to even subject myself to chemo/radiation and hormone therapy (Poison, burning and chemical castration )as her2/neu seems to be somewhat resistant to these therapies anyway. Any feedback from people that were once in my situation or know where to go to get UNBIASED info will be GREATLY appreciated!

Thanks

Candace

[Christine]

Candace,
There are several clinical trials with Herceptin for patients who are not yet Stage IV.

You cannot find any data because there is none yet. Herceptin has only been approved for 5 years and when it was approved, it was only for Stage IV bc patients.

There are several clinical trials for Stage, I, II and III patients to explore if Herceptin can prevent recurrance. These were just started about 2 years ago and it will probably be several more year before the data from these trials is published.

Below is a link to Genentech outlining their trials,

http://www.gene.com/gene/pipeline/trials/

And there is a link below to other NIH sponsored trials.

[JoJo]

I'm stage 3, yet I'm receiving weekly herceptin.

When I was first diagnosed in May, my oncologist declared that herceptin was for stage 4 patients only, but she would look into it. Then after I finished my 1st part of chemo regimen in July, I brought this up again to her attention, they were able to prescribe herceptin for me in conjunction with taxol.

I don't believe I'm part of a trial, otherwise they would've asked for my permission to join in.

Perhaps herceptin is already approved for patients that are earlier than stage 4 now?...

[Susan]

There is a clinical trial for Herceptin for Stage 2 Her2/neu +++, but the trial involves AC and the taxenes. However, it is possible to get the drug "off-label," that is, not as part of the trial. If it is not part of a trial, because Herceptin is not yet standard for Stage 2 breast cancer, the insurance companies may object to covering the costs. However, this route is certainly worth investigating.

[JoJo]

Oh, I didn't realize that herceptin was not yet in public use for any stage her+ cancer fellows. I just assumed it was, since I'm stage 3 and I had no problem getting herceptin.

My chemo regimen was: A/C 4x every 2 weeks, then 12x weekly taxol. I began weekly herceptin when I started taxol. I stopped herceptin in preparation for mast surgery. After I recovered from surgery, I went back on weekly herceptin.

I will continue on herceptin - still weekly - after starting on yet another medication: zolodex & either letrozole or anarestrozole, since I'm also ER+.

I'm currently going under radiation, 3rd week now.

[jessica]

Hi Candace-
Welcome to the board!There is a wealth of knowledge to find here among the courageous, supportive women who post.As you mentioned, you are new to this, so I would encourage you to use this site as a source of information & education.
There's lots to be found here.
Regarding chemo/radiation/hormone therapy...many of us on this board have responded brilliantly to treatment and continue to survive & thrive because of it.I was dx'd Stage IV (liver mets) at primary diagnosis & am NED today because of successful response to chemotherapy (Taxol + Herceptin).Granted, it took 49 weeks, but I'm still here & celebrating the long awaited return of my hair!
I hope you will consider researching & participating in a clinical trial-research & new drug development is our path to cure and we're withing striking distance!
I wish you well & take good care.