Have Sloan-Kettering/MD Anderson Docs Weighed In?

I have been following with great interest the posts about getting Herceptin after 12 months of chemo. I am curious if anyone has contacted Sloan-Kettering, MD Anderson, Mayo Clinic or any of the other cancer research facilities to see what they have to say about whether Her2+, node positive, B/C patients with no known recurrence who never received Herceptin should get it now. Given that we are a group who are unlikely to be the subject of a clinical trial, let's please talk more about what people are doing and how the doctors are grappling with us. If oncologists are willing to give Herceptin to those of us who are far out from chemo, are they recommending Herceptin alone or should another round of Taxol be given with it (and if not, why not)?

I know this is getting a lot of coverage here, but it is a question that is so important to so many of us.

Please everyone, let's discuss this.

Thank you.

Katie

Katie,

My experience with Sloan is that they are stirctly by the book. When my wife was stage 3a, they would not consider giving her herceptin unless it was in a trial. I don't know if this experience is true for others, but I will be curious to see.

Best regards,
Eric

Katie:
I went to the James Cancer Institute at Ohio State Univ. where they conducted some of the herceptin trials. I received a second opinion there and it was recommended that I take Herceptin. I took my last chemo in 8/03. The dr. did not recommend that I take it with Taxol. She said that is completely unchartered waters. However, it seems that some onc. are giving it with Herceptin. I am going to pursue a third opinion. My regular onc. did not recommend Herceptin for me at all. I feel I need it!
I am interested in this topic as well and I read this message board daily for help with finding the right answers.
Keep posting!

Dear Katie- I was given herceptin and xeloda five years after my first bc diagnosis. The cancer came back between my lungs and 3 5mm spots on my lungs. I won't have another petscan until next month. God Bless- Cathy

Dear Cathy, what was the time line of your treatment/reccurence? I wasn't quite sure. Why did you take Herceptin 5 years out? was it because you had recurrence or were you trying to avoid a recurrence?
i too am watching with great interest to see if any women on this site opt for taxol/herceptin way out of their original treatment.
Good luck everyone
Christine

I don't think anyone really knows for sure at this point what benefit, if any, taking Herceptin long after your original chemo has....having said that...I am lucky my Onc. is willing to give me Herceptin (I'm at Stage III A) to try to prevent disease progression. I had quite a bit of cancer...3 individual tumors in one breast, 10 of 20 positive lymph nodes, HER2+++ and pre-menopausal, so my chances of progressing to Stage IV are quite high. He has said that he doesn't know if the Herceptin will do any good but he is willing to give it to me on the chance that it helps. It has been 2 years since my original surgery and chemo. I had herceptin with taxol so don't think I will do the taxol again, just the herceptin. By the way, it has taken me a year to convince him to do this....definately an uphill battle. Take Care and Good Luck, Linda in Calif.

I'm only stage I bc, having had 4mm of invasive her2+ er,pr negative and a positive micro mets. I had chemo without herceptin because I never knew I was her+ until over a year after chemo. I have had several oncologist review my case at the Memorial sloan, Dana Farber and Roswell Cancer ctr. None of the oncologist seem to think that Herceptin is warranted for such early stage disease or at such a late point after recieving chemo. I have been NED since the summer of 2002. So far so good but I do have to admit sometimes I wonder if I should have had Herceptin at some point along the line. However, I have no idea how Herceptin would be given at such a late point anyway since it does seem to work better in synergy with other cancer drugs.

Anyone else out there that did not get Herceptin for early stage disease with a prolonged period of NED?

Appreciate the comments,
Robin P.

I also am almost 2 1/2 years out of original dx and chemo with NED. Original dx was 2 tumors in same breast-2.5 and 2.8 cm, 1/27 nodes +, er/pr + and her2neu+++. Tx was single mastectomey, with dose dense AC with taxotere instead of taxol. Had ovaries removed and have been on Femara. Just had bone scan, lung, ab,pelvic ct, and chest xray. All clear!!