A different kind of survivor's poll..
 

After reading all the wonderful stories in the survivor poll, a couple of things really stood out for me - all or just about all people who reached NED either responded to Herceptin and/or were er/pr+ and could take hormonals. This is consistent with everything I've seen on us HER2+ folks over the last 3 or 4 years.

Here's a new question for y'all: How many out there did NOT respond to Herceptin at all, at any point, AND could not take hormonals, and are still doing well? Love to hear from you!

Thanks,
Theresa, stage IV, haven't responded to anything yet

Dx 11/2003 2.7cm tumor, 3/17+nodes, er/pr-, HER2+++ age 38
Epirubicin/Cytoxin
Herceptin/Taxol/carboplatin
Herceptin/Navelbine
Tykerb/Xeloda
Phase-II Wyeth trial for HKI-272
Many breast/axillary surgeries, oopherectomy, bowel surgery from the Xeloda
Rads
what next?

Hi Theresa!

Sending big loads of hugs your way! ma

Theresa, could you give more info about your story. Were you stage 4 right away? I am er/pr neg and had 35 pos nodes in 2003. I could not take anything for hormones etc. I did the Herceptin trial. I truly believe in the data that one has to be PTEN pos for Herceptin to work. I checked my PTEN after the fact a year later. There are studies for PTEN inhibitors. I think Rhonda knows alot about the research

Thanks all
 

Michelle, very interesting story you have. No, I was stage IIb when dx, the cancer just plowed through every treatment, first going through lymphs, then lungs, then skin, then abdomen. I'm on my last legs now, very weak.

I've asked this question about folks who are HER2+, er/pr- not responding to Herceptin and finding something else that works over the course of the last 3 years, and I have yet to find ANYONE who fits that category...

Theresa

Hello -

Sorry to read of your plight - your disease seems particularly aggressive.

Are you too weak to try one of the new combinations such as Avastin (a blood supply interrupter) and Abraxane (Form of Taxol delivered in a liposome)?

There are other new drugs if you have a "creative" med onc in a major medical center.

I am hormone neg and have not been able to take any hormonals in my 6+ years of fighting cancer. I was also just post-menopausal at dx, which may make the difference.
Guess I am one of the few hormone neg people who have achieved a long term NED status as Stage IV.

Theresa-

I've never responded to herceptin, but I did respopnd initially to cytoxin/epirubicin/taxotere. I also had a great response on xeloda for awhile, but have not done well on my subsequent treatments.... We're tring gemzar/cisplatin/tykerb currently - but it's day 22 and unfortunately I don't feel any better, but obviously we'll give it some more time.

Are you still in the wyeth trial?

Regards,

Teresa,
I'm so sorry you aren't doing well. It's hard to think about new treatments when you're feeling weak, but maybe you can consider the Avastin, as Steph says, or a combo of Avastin and Abraxane.

I'm er/pr-, and am now on Abraxane/Tykerb. I started the weekly Abraxane last week as Tykerb hadn't arrived yet, and can honestly say I had very minimal side effects. I was give Zofran as a precaution but am not sure I'm going to need to continue that. It seems to be not as hard on the blood counts as some other chemo's I've had.

I hope this helps, and at least know that we are here for you on your journey.

<3 Lolly