Any early stage(1,2 or 3) people are getting or got Herceptin for more than a year? I am just getting panicked for the idea of not getting Herceptin after my one year of Herceptin is over. I had supraclavicular node involvment at the initial diagnosis. What was your oncologist's response when you had asked for a 2nd year of Herceptin? Any response would be appreciated.

thanks,
Julie

Julie:

I live in Arizona and my stage is IIB with a 3.5 cm tumor and one node postive and I finished my first year of Herceptin the end of June and continued onto year two. My oncologist agreed when I first asked in April but he did not want to add a Taxane unless I really persisted as he worries about the long term affect of the harsher chemo drugs. He will,

My surgeon also said a second year was a good idea. She was happy I was pursuing a second year. She has had some Stage III patients who had been on Herceptin for two to three years and they have done great.

I hope you get a second year if that is what you want.

Barb

Julie,
I was dx at stage IIIC in May. I have completed dose dense AC and will do taxotere, carbo and herceptin next. At the end of one year on herceptin, I will most likely do a second year. My onc wants to see the results of the HERA trials before making the final decision. My MUGA is 64, so my heart is strong to begin with.
Arielle

I really just started my first year (on June 17) but plan to discuss with my onco sometime in the beginning of the new year (or sooner if info comes out of Hera at the November ASCO meeting).

Warm regards

Becky

I am a stage 11B, (2.4 cm tumor, lumpectomy) finished 4 rounds AC, 4 rounds taxotere/herceptin, 33 rad txs in September 2004 and am finishing my one year of every three weeks Herceptin. My onc has agreed to another year of herceptin as long as my LVEF(53 right now) does not decrease significantly. I will continue to have a MUGA every three months. We look forward to the results from the HERA trial and will use that information for future decision making. It's a complicated call but I feel best cautiously going ahead with another year rather than waiting for the results of the study. I wish you the best in your decision.

Hi Carol,

Are you in California? I want to look around for oncologists who are willing to give a 2nd year of Herceptin before my first year ends. I live in Bay Area California.

Thanks,
Julie

Julie-

I am in Georgia-not close! I will be surprised if you are unable to find an onc in the Bay area who is willling to consider another year of Herceptin. California is usually way ahead of us in trying novel approaches! Good luck in your quest.

Julie;

I too had supraclavicular node involvement....neg on underarm nodes. Went through 4 A/C and 4 Taxol, radiation and am now on Herceptin and Arimidex. I also panic when I think of my year being over and intend to gather as much info as possible to present a case for continuation with my onc. Really though I am replying here to make contact with another supraclavicular node person. My tumor was 3 cm and I figured it travelled to the node vs underarms in the usual way because of the Her-2 factor. How about you?

Cathy

My recurrance was supraclavicular as well. Chemo cleared it up. I would not even consider for an instant not being on Herceptin for the rest of your life . And It will be a long one! Change doctors if they suggest you get off it. Herceptin keeps us alive.....period!

Cathy,

I was diagnosed in Sept 2004 when I was pregnant with my second child at 37 years. Her2+++, er-,pr-. tumor size 4.5cm, 4 nodes under arm and supra calvicular node were affected. Had dose dense AC+Taxol then had mastectomy, radiation + xeloda + Herceptin and continuing on a year of Herceptin. Please keep in touch with me.

regards,
Julie

lolam;

Did your recurrence happen while you were on Herceptin?

Cathy

Cathy,

Was your supra clavicular found at originAl dx or on recurrence?

If at original, how was it detected?

Sassy

Sassy;

Supraclavicular was found originally. I had already had my lumpectomy for the primary in my left breast and on physical examination the oncologist found the tumor on my first vist to him. I live in Canada and when I went to my md after I found the lump originally in my breast (3 cm) I was sent to the local surgeon and after a biopsy had the lump removed. He didn't find the lump nor did the radiation oncologist. It was 1 cm and confirmed with a biopsy. I was immediately started on chemo, etc. The test for Her-2 was suggested by me as I started to read about results of Herceptin.
Cathy

Sassy;

I don't think I was very clear....sorry. I had lumpectomy...appointments were made then by the surgeon with both a radiation oncologist and oncologist. I happened to see the radiation oncologist first who didn't find the lump. In about two weeks I saw the main man....my oncologist who did find the lump. He is in charge overall of my treatment. If no lump had been found I would not likely have had chemo at all and possibly (if you can imagine) not even radiation.

Cathy