Herceptin after treatment--Stage I, II, IIIa or b

I have read many posts lately and i felt it easier to ask a new question than to go back and find all the women who fit this description.

I'd like to hear from the women who have had non-metastisized tumors and are receiving Herceptin for a longer time period (one year or whatever it may be) after all their other treatments are finished (surgery, chemo, radiation).

If you fit this description, can you tell me:

1. Where you are and the name of your doctor

2. What data was used to support this decision (articles, studies, etc.)

3. Any other helpful info that I can use to finalize my case to get Herceptin for a year.

I received Herceptin with Taxol & Carboplatin for three months before my mastectomy and three months after. I am now in the middle of six weeks of radiation. Since my tumor was large, I had node involvement, and I am ER/PR negative, I feel strongly that Herceptin is my only option. The odds are around 95% that some of my cancer cells left my breast and node area.

I also am pre-menopausal and don't have the correct HLA typing to get into one of the vaccine trials, at least right now.

thanks!
Val

Hi Val, I am stage 2 and I will be taking herceptin for a year. I am in Minneapolis. My onc is Dr. Dien. I didn't have to do any convincing to get the year. I think after asco in May it is pretty standard for stage 2 to get Herceptin for a year. I am interested in staying on longer than a year and am interested to hear from anyone if their dr. is letting them stay on longer than a year.

Laurie

Hi Val,

I am a stage 1, node negative, 1.3cm tumor, grade 3. I did a lot of research, via the internet. I typed in, node negative breast cancer and Herceptin. Although, I did not fit the ciriteria for the trials here in the U.S., the HERA trial in Europe, did include node negative women. Anyway, I then went and got 2nd and 3rd opinions from a local tumor board and Stanford University.

The doctors on the tumor board said, that even though I had a small tumor, the grade 3 and Her2+++ combo made me a good candidate for Herceptin. The doc at Stanford University, who is involved with the Herceptin tials and vaccine trials, said, that if I were her patient, I would be on Herceptin. I am currently on Herceptin every three weeks for a year.

Hope this helps.

Karen

Laurie,

May I know who is the doctor at Stanford universtity who is involved with Herceptin and vaccine trials? I am interested to get a second opinion.

thanks,
Julie

Hi Julie,

I think you were talking about my post. I went to Stanford to get a second opinion. I saw Dr. Guardino. She is involved in both the herceptin trials and the vaccine trials. I really liked her. What I didn't like, was the 3 and 1/2 hour wait to see her. In the end, it was worth it. I would bring along a good book.

Karen

[Rozebud]

Val - how many nodes did you have positive? If >4 you are stage III I think and you'd qualify for a trial at U of W (vaccine). However, you'd have to be post menopausal or otherwise not able to have children.

Rozebud--
I was 5/8 positive nodes (I probably had more positives than that, but my surgeon and I didn't believe in taking a bunch more nodes just to take them--neo-adjuvant Herceptin did a good job of killing what was there--one of the nodes had actually been cancerous, but at the time of surgery & pathology, the Herceptin had already killed what was there). I am stage IIIb because of the nodes and tumor size (9 cm).

I am still getting periods (just started up again after chemo), but I am done having children. I thought you had to be officially in meopause for U of W vaccine trial?

Val

[Rozebud]

Yes, you do, but not HLA+. If you can somewho get menopausal, you could qualify. If you're done having kids, maybe a hysterectomy? I know it seems drastic to do surgery for a vaccine, but think, no more birth control! And I've heard they can do them laproscopically? Just a thought. I'm looking into one as well. I'm in menopause with the zoladex shots.

If you are premenopausal I think a tubal ligation would make you eligible to enter into the trial but I am just worried to do that thinking that that the surgery trauma may cause a reccurance. I didn't find out if IUD will make one eligible, may be not logically thinking.

Julie

I was offered Herceptin 5 mos after adjuvant AC/T chemo ended. I am node-neg, 2 cm tumor. I am being treated at Georgetown U Med Ctr, in DC.

Thanks, everyone. I will be getting weekly Herceptin after radiation. I was trying to be prepared with data for my upcoming visit with my oncologist when I asked you all this question, but it turns out that I didn't really need it. He agrees that Herceptin is the only thing for me and I will be getting weekly Herceptin again when I finish radiation.

Thank you for your help :-)

Val