Herceptin for Stage 111b (IBC)

I have a question regarding Herceptin perhaps, Joe or Christine can help out with this one seems they are on the West Coast. I think the West Coast is more aggressive in their treatments then the East Coast.?? Does anyone get Herceptin as a prevention/maintenance for stage 111b which is IBC but I think stage 111, 111a or 111c would apply to this as well. That is with no known recurrence. That is being tossed around up here and the doctors here say they can not give it or they chance loosing their license. I was wondering if it would then have to be giving off label. I know for stage 1 and 11 its off label. What is the process of getting it that way. Thanks in advance for all your help, hugs, Sandy

I have been getting Herceptin since January 2004 for stage 3c breast cancer with no known recurrence or mets. I have always wondered why some people can get it and some people get it in trials only. I thought I was able to get it because a few years ago I would have been considered stage 4 due to the node in supraclavicular area being positive for BC. I live in southern CA and will continue to do Herceptin until January 2006.

Hi Katherine,

I am also stage3c as I have a poitive node in supracalvicular. Are you getting Herceptin for 2 years off-label? I am going to get it for a year. Started since march 2004. I would like to know more about your supra node, did it disappear with the chemo or did they do surgery?

Thanks,
Julie

I have been getting Herceptin since June of 2004 with carboplatin and taxatere until the end on sept 2004. I stopped it during radiation ( six weeks) and I am now following up with Herceptin since the beginning of Dec. 2004. I will continue until Dec 2005. Then we will take it from there. Taking it one year at a time. I am from Saratoga Springs, New York which is where I also get my treatment. Sally

I forgot to tell you that I had 8 positive nodes out of 16 removed. One small spot on my liver which puts me at stage IV. I haven't had any recurrence. Just had a CAT scan and PET scan which came back good. I had my yearly mammogram which showed a small change in my "healthy breast" They said it wasn't cancer but was a change from last year. Another mammo in 6 months. Sally

[Rozebud]

I am IIIC but was told I could only get it through a trial. However, I know other oncs that will offer off label....

I am in the medical field and I can tell you that drs. can RX drugs off label but yes they can get sued more readily so they do like to protect their own interests. Where i go there is a stage 1 pt. getting Herceptin. Trying to get your insurance pay for it is probably the biggest challege. I doctor shopped until I got on it but I am stage 4 (brain mets only).

I am inquiring this information for someone else. The insurance will pay for it. However, I believe the doctors want to wait for a recurrence. I don't understand why they are so careful, if this is what you call it, about some things and not about others. The doctor in this case insisted she go on Tamoxifen and she is Er/neg. She had to get a second opinion and it was no way as there was no clinicial reason for it. Insurance was o.k. with it. Oh well, maybe more to it then we know. There is always the fine line stuff we don't understand or know about. This board again is a great help at a frustrating time like this. Thanks for all you responses. hugs, Sandy

Julie and Catherine
I am on Herceptin for mets to the supraclavicular nodes, they were removed and found to be BC Her2 Pos. I have been on Herceptin 1 1/2 years and now i have another one in that area...they are monitoring it, but back when the 1st ones popped up and were biopsied, I was classified stage IV....I was stage 1 previously. I believe Lolly has had the same recurrences and is also classified stage IV....just wondering if classification is at the Dr's discresion ....seems like it. From everything I have read, mets anywhere other that the original breast after original diagnosis classify one as stage IV.

Hugs
Sheila

Hey Sandy,

I just wanted to add that I'm not sure it's a West Coast /East Coast thing exactly but UCLA docs definitely seem more experimental in their use of herceptin (along with MD Anderson). When we were trying to get Rachel herceptin off protocol in Boston about a year and a half ago, we went to see one big name researcher at Dana Farber in Boston completely refused to entertain the idea of doing so. When we said something about how folks at UCLA seemed willing to talk about off label use he said "Oh, UCLA. They'll throw herceptin at anything." This same doc is now on record, just a year or so later, as saying that there's almost no doubt that the adjuvant herceptin trials will come out positive!

His name is Harold Burstein, for anyone keeping score at home!


Jeff

Thanks Jeff! Interesting as my friend has just been to Dana Farbar and they will not give her Herceptin. In fact she had an appointment to have her first treatment and she got to her oncology and they backed down and would not give it because Dana Farbar wrote a letter saying not to. She is doing her research and so will figure it out. She may try for a trial. Thanks anyway, we kind of thought there was a difference with the West/East coast. That maybe good and it may not be. Blessings, Sandy

I was diagnosed IIIC in Mar 2003 because of a lump in my breast and enlarged lymph nodes, including supraclavicular nodes... After CET(taxoetere) treatments then lumpectomy, my doctor (in Phila) thought Herceptin might help and I was not in a trial. I took it once every three weeks w/ Navelbine for 3 months (overlapping my radiation treatments).

In Sept 2004 I felt a lump under my lymph nodes. All other scans/test clear. In Dec I had a compelte axilla dissection, and now I am on Herceptin/Taxotere (three weeks on, one off). I think the taxtere will stop after 4 cycles, but the herceptin will probably be given to me for at least a year...