Herceptin Info and Opinions Needed

I'm one of the many who was unable to get herceptin initially. I was diag. Stage 3 in July 2002 and finished chemo (A/C then Taxotere) in Jan. 2003.
I asked about herceptin at the time but my onc said I didn't qualify for clinical trials due to neoadjuvant chemo and she wouldn't give it to me off label.....so, I let it go, which I probably shouldn't have done.

I asked about herceptin now and her nurse called back and advised my onc said that at the ASCO conference they weren't recommending it for anyone more than a year out of treatment and that she thought it would be a "waste of time" for me and that it would still be available for me if I recurred. Being Stage 3 I realize it's like that I will recur and would like to put that off as long as possible. I don't want to recklessly put drugs in my body that won't do any good but I guess I don't see why it might not be of help to me. What is so magical about one year...If it would help someone 1 year out, why not someone two or more years out.

Before I contact my onc about this again I'm trying to gather any info I can. Any info, thoughts, or opinions would be very helpful.

Thanks.

Pat

As a HER2+++ who was never told by the docs what my HER2 status was... and like many others, had to request that info on my own from the lab...

And as someone who specifically ASKED at the time of diagnosis if there were any clinical trials I could be in that might be worthwhile (like many patients in early 2002 I didn't know anything about Herceptin), and my onc just laughed and said there are thousands of clinical trials out there, and changed the subject...

And as someone who understands that my onc is clearly recognized by his counterparts to be at the top of his field....

I think somebody owes us a MUCH better explanation about why those of us who are HER2 positive and who dutifully went through the horrors of chemo without herceptin are so casually relegated to the "too bad, so sad" pile.

What clinical trials have been completed to demonstrate that HER2 positives who did not have Herceptin at time of treatment definitely will not benefit from adding Herceptin, or some version of Herceptin-with-Adriamycin-and-a-taxane, now?

I was dx last summer, stage 3A with lots of nasty stuff. My onc did nothing to educate me about her2. I was discouraged from doing the 9831 trial because the arm that didn't get herceptin was "not aggressive enough." I listened to the good doctor and entered another trial where I had weekly chemo. As I learned more about her2 I deeply regretted not pushing for the herceptin trial. We had many discussions about it and he essentially told me to forget about it and move on.

Fast forward several months. Bitter, a little. Giving up, no. I am a different patient than I was when I started this and I am in my oncs face weekly asking for herceptin. He is dragging his feet because I am in that gray area. They "don't know what to do with us."

I know we need to sit tight and wait for some guidelines to come through from the trial. I wonder though if we will even be addressed. I have a feeling no one wants to go there.

So, I suppose if one is only 4 months out of chemo (7 wks out of rads) I should be able to get Herceptin now? What was the improvement % if receiving it sequentially instead of concurrently? Who ran the study on this so I can refer it to my onco? It seems I should be able to qualify for Herceptin therapy now (I did ask at the time but I couldn't receive it from anybody off label and I even went to Sloan Kettering and they wouldn't).

Thanks in advance

Becky

Hi all,

My partner Rachel received a year of herceptin off-label. She had to switch from an oncologist she liked and really connected with (who had seen her through surgery and chemo) to one who is nice enough but not easy to connect with--but who was willing to give her the herceptin

Rachel's original oncologist--like many of those discussed on the board, is compassionate, up to date on her information, and absolutely tied to the dominant model of oncology in the US which is strictly "evidenced based."

That of course is very narrowly defined. It is of course evidence-based to note that women with her2+ disease recur sooner and more frequently than those with her2- disease. And to want to do something beyond the current standard of treatment...

I'm sorry to rant, but like Alaska Angel and dberg we had to educate ourselves about her2 in the face of a number of dismissive docs (including one at Dana Farber, an expert on her2, who only 2 summers ago told Rachel--with a chuckle--that it would have been "heroic" for her to try to travel to Canada from Boston--four hours drive!--to try to get into their herceptin trial). Same guy just published an article on how her2 is really a different disease and the herceptin trials make that clear..

So, long story short: at the recent ASCO conference there were presentations about three trials--two US and one international that all demonstrate a major benefit from using herceptin. You can view the presentations here.

http://www.asco.org/ac/1,1003,_12-002514-0...0_21-001,00.asp

Or find news summaries all over the web. Just go to your fave search engine and type in Herceptin + breast cancer+ trial and you'll find them. Or go the genentech (gene.com) or Roche (roche.com) websites for press releases.

There's no reason you shouldn't get herceptin at this point if you want it...

Good luck,
Jeff

HEY ALL OF YOU OUT THERE HER2+ FIGHT FOR HERCEPTIN BEFORE A REOCCURENCE! I finished my last taxol rx in Feb 2004 St3 22+ nodes. If I knew then what I know now I might not have mets to the liver in Oct 2004. I went back and forth with my oncologist in Aug 2003 about Herceptin. Luckily. today I'm doing fine, liver scans are better, still NED yet. I would rather be St3 than St4. I'm trying to get past the what ifs. Please fight for the Herceptin. lorri

Hi- I was diagnosed with breast cancer 5 years ago. After the chemo treatments - I was fine for 5 years. Now it's back in my chest wall and near my lung. Also, one spot on my back. I was put on herceptin. This past Thursday was my first treatment. This week I am supposed to start xeloda.God Bless- Cathy

Hello everyone,

At some point Dr. Sledge states that the current data support giving herceptin to anyone who is less than six months out of treatment (chemo or radiotherapy), so there should be no problem making a case to an insurance company, if you fit that. By the way, that does not seem to mean that giving herceptin later is pointless, just that they don't know.

My onc here in the UK, who is on the HERA trial board, agreed to herceptin although I am nine months out of treatment and seems generally worried about his patients on the HERA trial observation arm because Roche has not yet provided guidance for getting these patients on herceptin. All of these patients would be at least one year out of treatment. I've had to pay for the drug part myself (since it is not authorised for this use in Europe), but I figure that it may be the best £20,000 (about $40,000) I ever spend.

Best wishes,

Christine

Christine,
I listened to his presentation a while ago, but will go back and listen for the "six month" bit specifically. Thanks!

Does anyone know what is so magical about the 6 months?

I think you should think about getting a new oncologist - it doesn't sound like this one listens to you or is concerned.

Jan,
I have been considering switching oncs for weeks now. He is just too conservative for me, or maybe cautious is the word. Interesting, because he is a young guy. I'm supposed to hear from him today about the herceptin. Regardless of what he says I'm going for a 2nd opinion.

Thanks for the kick in the pants!