Lets do a roll call on adjuvant Herceptin trial

My diagnosis was in December 2003. I had a contralateral mastectomy in Jan of 2004. ER/PR-, HER2 +, stage 3a, 10cm DCIS with multifocal tumors 4 nodes positive. I am in the BCIRG 006 trial and so far I'm NED. I was also assigned to the arm that received taxotere/carboplatin x6 and Herceptin for a year. The Herceptin was given along with the taxotere/carboplatin and in the weekly intervals, and then continued once every three weeks (a triple dose) for the rest of the year. After that I had 28 radiation treatments with 5 boosts.

I did have to stop Herceptin for one month due to a bad ejection fraction, but then went back on with no ill effects.

Kelli,
I am in the same "no herceptin" boat, but for slightly different reasons. Although I was 2/13 node positive, grade 3, her2+++ my onc did not push a herceptin trial and instead I did another one that he considered "aggressive." I have since learned so much more about her2 and deeply regret my decision. I finished chemo 8 weeks ago and am halfway through rads. I too will"cheat" and go off this trial, (even though I'm done with chemo), to get herceptin. At 46 I'm not going to sit around and wait for a recurrance to happen.

I sincerely hope ASCO will address what to do with us in the gray area because I know for a fact my onc will not give it to me unless there is a protocol.

I am very curious to know what other's in this gray area are going through. What are your onc's saying and doing?

Diane

Diane,
Both oncologists have not been rushing to get me on Herceptin. The one at Hopkins wants to go to the conference before giving me a conclusion as to what to do. I don't believe they know the answers to if receiving Herceptin alone and post chemo is any benefit. I am just not sure what to do. I may survive this for years even without Herceptin. Who knows? I am asking myself if I want to go through the hassle of getting a port again and weekly infusions. I am well on that road to recovery, exercising, and feeling good. I feel so mixed about all this. The more I read others'
responses and experiences with chemo the more uneasy I feel. Everyone I dealt with just didn't get overly excited or pessimistic about my prognosis. I feel more vulnerable as I read more, yet I have the need to be informed. I'll post again as I know more. What are you doing? Kelli

Kelli,
I see my onc Wed. and have a whole list of questions, the first being about the availability of herceptin for me. I'm pretty sure he will want to wait for word from the ASCO meeting too. I saw my rad onc this afternoon and he said I should push for it. Incidentally, he had no idea I was her2+++, which I thought that was interesting! Does it even matter?

I'll let you know what happens Wed.
Diane

I was diagnosed 6/03; 2.9cm tumor; 10+/16 nodes; did not participate in a trial because I was nursing when diagnosed and could not have immediate surgery; I did A/C dose dense first; then surgery; then 12 weekly taxols with herceptin; 28 treatments radiation & 40 more weeks of Herceptin finishing in Aug/04. At first I really wanted another 6 months of Herceptin but have accepted the "no" after 3 opinions and am thankful for the year that I was able to get. I know that the role call was for trials but I kind of did it off label. Am NED and just finished the Avon Breast Cancer Walk in DC (39miles) and made it! Whew!

I'm in the BCIRG 006 trial and am on the arm with 4 x AC, 4 X Taxotere and a year of Herceptin. I have 2 more Herceptin treatments to go and then I guess I'm on my own! So far so good!


All the best to all of you!

Cheers
Pauline

[Kim in DC]

Hi,
I was diagnosed 8/2004 with inflammatory BC stage IIIC. I received 12 weeks neoadjuvant Herceptin/taxotere and and 12 weeks adjuvant Herceptin/navelbine. So far no mets. I'm looking into PA vaccine trial

Kim

Hello!! In the arm of no herceptin.. but got the news tuesday that my doctor wants me to go forward and get it. At 34, he feels quality of life is more important. There is much to consider, with the heart damage I got from AC and Taxol. I lost a total of 16 muga points.. I have since gained 11 back and have one more muga tomorrow and then we will talk about an echo test. The study may drop me, since I did dip below 50. I have been out of treatment for 6 months now. It should be interesting.. but I want herceptin in a bad way!

I was dx in july 2003. I was in the no herceptin arm. My doctor called last week to ask if i wanted to start herceptin. I am getting my port put back in tuesday and will start friday. I am very happy to be getting this. I am almost to the two yr mark don't know what that means in my case but my doc really wants this given the size of my tumor and several positive nodes. I am grateful for herceptin. I am 35 with two small children.

I was in the B-31 Trial. Recieved AC then Herceptin weekly with paclitaxal every three weeks. After completing the paclitaxol I was to have continued Herceptin weekly for an additional 9 months but I had to discontinue use of Herceptin because of heart damage. Regained normal heart function 8 weeks after discontinuing Herceptin. Hopefully, I recieved the benefit from Herceptin because I had it through all of my chemo...at least that is what my Onc. thinks. I was DX'd in April of 2002. Had my last MRI in Feb. and everything came back clear. Currently I am NED. Linda in Calif.

Hi, I'm late to this interesting thread. I enrolled in NSABP B-31 in April of 01, and lost that toss - no Herceptin. It was an extremely hard blow then. I'm okay with it now. I'm NED, initial diagnosis of occult primary with a 6cm axillary node (five of eleven were positive), ERPR-, grade 3. I'm concerned about those in the control groups who have recurred, or who are NED but still suffer from Herceptin envy.

To me, this trial differed from many, in that the outcome was already fairly certain to most (that it would have some benefit), the risk was small, and the stakes very high (high risk adjuvant treatment, potential "cure"). What do you think of the idea of Genentech and/or the trial groups offering formal support (emotional) to those who didn't get Herceptin and are having a hard time with that, especially those who've had a recurrence? I don't know that it would make a big difference - but it would be a nice gesture.

Also - do you think that out of these trial stats they'll be able to find any hard info on exactly HOW much it increases risk of recurrence, and/or aggressiveness, to have HER2+ cancer? There seems to be a lack of hard information - in fact, it doesn't seem that we know much more about quantifying this increased risk than we did when HER2neu was first discovered. Anyone close to the cutting edge on this, with some information? I'm also curious to see something about FISH levels (actual numbers, not just + or -) and corresponding increased or decreased risk and treatment response.

Debbie Laxague

I have been on herceptin since 1999. I am wondering why. I have had recurrences in lymph nodes (under the opporsite arm as well as chest wall and inflammatory bc after a lumpectomy with 19 neg nodes) and have done taxol/herceptin, navelbine/herceptin, now I'm on Xeloda and herceptin. it seems many of you stopped herceptin after trials - my dr recommends staying on it - it is very expensive as you all know and is depleting my lifetime max for insurance. Has anyone else been on herceptin for a long time? Those of you who have stopped after a limited time - were you told the reason for stopping it? Any help would be greatly appreciated.

I was DX in Oct. 03 and was enrolled into the BRCIG 006 trial and started in Dec. 03. I drew the Taxotere, Carboplatin, Herceptin arm. I was stage II or III depends what path report you get? 3/12 lymph nodes +. I had 30 days of rads. I was er/pr- and HER 2 3+++ with FISH 7.6. I had 6 rounds and weekly Herceptin for 21 weeks then every 3 weeks for 52. Ended in Dec. 04.
Am Dancing with NED and don't think I will every stop.
Would love to see some data on this combo.

[Rozebud]

Joann - I can only guess he has you staying on herceptin because of your lymph node recurrance. The women who are on trial and stop herceptin have not yet had a recurrance. Even if it is local, my understanding is that once you have had one, you are outside "clinicial trial" status and often stay on herceptin indefinitely. Hope that helps. I haven't had a recurrance and would love to stay on it longer! However, you make a good point about depleting insurance lifetime maximums....

I have been trying to get Herceptin. My onc will not give it to me. Dx 12/02 at age 39, IDC 2.5 cm, ER/PR -, HER2 +, but node negative. I had four rounds of A/C and right mast.

I am NED at the moment, but scared what the future holds because I am HER2+.

I want the Herceptin but I cannot find anyone who will give it to me with negative nodes and this far out of treatment.

Anyone with negative nodes, Stage IIa in the same situation??

Thanks for your responses.

Wendy

I was dx 4/04 - 1.5 cm, er/pr-. 1 micro met to sentinal node, her 2 +++, had 4 ac followed by 4 taxotere along with weekly herceptin for 10 weeks and now doing herceptin every 3 weeks until August 05. I am doing it off label. I will have scans, etc in August to confirm NED and hopefully remove mediport. You all are my heros.

Best.
Tami

Hi everyone

I'm late getting into this poll but thought I would put in my two cents.

I was Dx Aug 2003. Stage 2A. 2 cm. 3/21 positive nodes. Had 4 A/C, 4 Taxol, and then started one year of Herceptin. Finished in Feb. 05 and have had no recurrence!!

I have had 25 Herceptin infusions thus far. I am so glad that I was accepted into the study. I have had a bad cough ever since I started, have had chest xray, cat scan w/contrast and ultra sound. Everything came back negative. My onc told me last week that it must be a side effect of the herceptin and that I would have to put up with the cough until I had completed the tx's.
I would really like to know if any of you had a cough while getting this.

Hi cailleyj,

When you say you had an ultra sound, did you mean an echocardiogram of the heart? You should be followed with either echo's or MUGA scans of the heart every 3-6 months while on Herceptin therapy, especially because of your cough. Good luck.

Susan

I am getting the Muga scans. I get them every three months. When I had the cat scan, they found spots on the spleen and liver and I had an ultra sound to check that. Was told that they were cysts.