With all the talk about the Herceptin trial, we should all post that participated in the trial. Tell what arm you were in, when, and if you had a recurrence. I think this will help others out wanting to start Herceptin is the've not received it.

I started Herceptin trial march 2004. Ended in March 2005. I was in the arm that got Herceptin AFTER taxol. No recurrence so far!

I was on the arm that didn't get Herceptin. Started the 4xAC July 15,2004 - finished 12 weekly Taxols 12/29/04. So far so good - but I know this is very early days. Meanwhile onc called last Thurs to say official word (from trial managers I assume) is to put me on Herceptin now. Not sure of benefit doing it after chemo, but they must think there is some to mandate this now. I was supposed to see onc today but that's been cancelled and I will go Wed. We'll see. Unclear if insurance will pay for this - I don't want to talk to them until I have more info from onc.

I was in the herceptin trial. Original diagnosis Stage 3b nov. 2001
Feb. 2002 had 12 weeks of herceptin plus taxol
continued just weekly herceptin until Feb. 2003.
No recurrence
Thank God NED at this time

I was in the herceptin arm of the NASBP 31 trial. I began 9/01 and completed treatment 12/02. I received a/c x 4, taxol + herceptin x 4, and 48 weeks of herceptin alone.

Currently NED! My daughter, who was 15 months when I was diagnosed, will be going to kindergarten in September. I can remember wondering if I would be around to see that happen.

I am incredibly grateful that I had the opportunity to get this drug, and I am so happy that it should now become available to everyone.

My mom was diagnosed in Feb. 2002. She had a 2.9 cm tumor and 7 lymph nodes involved. After must discussion on whether or not go for a herceptin trial or dose dense, my mom went for the clinical trial. She was accepted into the arm of a trial that got herceptin for a year on a weekly basis. She had AC and Taxol (in conjunction with herceptin). She finished herceptin in July of 2003. She has had no reoccurence.

We are all thankful for the herceptin helping to lower her chance of a reoccurence. However, we often think of the women in studies who were chosen for the arm that did not receive the herceptin or the women who received it and had a reoccurence. The news of the recent success of herceptin is probably met with mixed feelings by many. May we lift these women up in prayer!

I participated in the Herceptin trial, receiving AC x4, Taxol x12, Herceptin x52.
Finished in March, 2003, no recurrence, doing very well and very grateful for it.
Original diagnosis in August, 2001, Stage IIIA.

Trudy

I started my trial in May of '03 with 4x AC then 12x Taxol w/Herceptin then 40x Herceptin. Stage IIIa, one node positive. So far, so good! Very happy and grateful!

Susan

Dx'd 1/04 at 33, Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7, 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin, mastectomy, rads (7 weeks), tamoxifen and zoladex (5 years)

NED through 5/05

I was diagnosed in July 2002 with stage IIa, Her2neu+++ , a tiny .5 mm tumor, and 10 of 16 lymph nodes affected. I had a lumpectomy, 3 cycles of Epirubicin and Taxotere (administered separately, on consecutive days), then 6 weeks of radiation, then another three cycles of Epirubicin and Taxotere - for maximal length of baldness...

All that finished at the beginning of January 2003, and at the end of the month I started my Herceptin, one-year arm of the European HERA-study. I got it at three-week intervals and had absolutely no ill effects except perhaps a bit of weakening of my fingernails, and the sniffles. I got 18 doses, ending in late January 2004, and have been disease free (THANK GOODNESS) ever since.

I think every woman who is Her2neu positive should very very seriously consider getting herceptin. DON'T be deterred by the possible side effects, unless your heart is indeed weak. None of the women in the study here, as far as I can determine from chats with the cardiologst, has had any cardiac ill effects at all. And if you do show any problems, they will simply stop the Herceptin.

I have just passed the half-way point in the 2 year arm of the HERA trial. So far so good. A little tired and a runny nose, but otherwise herceptin is a breeze after FEC.

Cheers,

/Christine

I was diagnosed in July 2001--large tumor, 11+ lymph nodes, ER/PR-, Her2+. Received 4 A/C, 12 weekly Taxol and 52 weeks of Herceptin. Last herceptin treatment was in March 2003 and I, thankfully, remain NED almost 4 years after diagnosis. Thank God for Herceptin and for the latest study results showing it works! Hopefully all those in the control group of the study can now receive Herceptin, too. Hugs to all, Audrey

Audrey,

Did you take Herceptin along with taxol or after finishing the taxol. This information would be helpfull for people like me who just started Herceptin after finishing Taxol.

Thanks,
Julie

Hi all, I was diagnosed 5/04 - IDC, 1.5 cm, node positive (9), right MRM, ER/PR pos and Her2neu+++. Selected for Herceptin arm of trial.

June - Sept 04 - 4 cycles AC
Oct 04 - Jan 05 - 12 weekly cycles Taxol
Oct 04 - 4 weekly cycles Herceptin

Muga scan after 4 cycles Herceptin showed degradation of ejection fraction which was already down somewhat after the AC treatment.

Taken off Herceptin Oct. 04. Finished up the Taxol part.

Feb 05 - Mar 05 - 33 rads

I'm going to ask my oncologist if I can go back on the Herceptin with periodic breaks to let my heart recover. After a 4 week break after the last Herceptin treatment last fall, it went from the low 50s to the mid 60s.

Anyone else out there who had heart problems and had to stop Herceptin? Thanks!

Hi,
I am a new responder but have read everything on this site. I was on the BCIRG 006 Trial which I started 12/03. I was wondering if anyone else was on this trial and what their response is.
I had a 1.2 cm, ER-PR-, HER2+. I had a double mastectomy with reconstruction and then started the leg of the Trial AC x 4 then Taxotere x 4 + Herceptin weekly and then the Trial was for Herceptin every 3 weeks for another 9 months. I had trouble with the 3 weeks so did it every week. I finished in March of 05. I am hoping the same results will come from my trial.
I want to thank you all for sharing. This has helped me through the last year and a half. No one else really knows what we go through.
Diane

Hi Julie, in response to your question about my post--I received the 52 weeks of Herceptin AFTER I finished the weekly Taxol, there was no overlap. Sorry I didn't make that clear... As I understand it, Herceptin works better when taken together with Taxol but it still can be effective by itself. Hope this is helpful, Audrey

Hi! I was diagnosed in July, 2001 with 3cm tumor and 7 positive lymph nodes. I had 4 A/C , 12 weekly taxol with herceptin and then 40 weeks of herceptin. I ended my treatment in November, 2002. So far so good. I am 41 years old and I feel good.

My diagnosis was ER/PR-, HER2 3+, stage 2a, 3.8 cm tumor, node negative, lumpectomy and I am in the BCIRG 006 trial and so far I'm NED. I was assigned to the arm that received taxotere/carboplatin x6 and Herceptin for a year. The Herceptin was given along with the taxotere/carboplatin and then continued for the rest of the year. After that I had radiation with 5 boosts. I began the trial January 15, 2004, and had my last treatment of Herceptin January 4, 2005. At this point I'm NED.

Bonnie

Hello, I was diagnosed in November 2003 with a 1.7 cm. tumor and one positive node out of six. I had 4 A/C, then 12 weekly taxol with herceptin and 40 weeks of herceptin. I'll be done in June. They had to take me off the herceptin for a month because my MUGA scan dropped dramatically, but I also had the scan one day after having a very high fever. My heart recovered. So far, so good. Monica

Hello - I was dx in Dec 02 at age 33 with 1.5 cm tumor, her2 strongly+, er/pr strongly +. Had lumpectomy, 4 AC, 4 taxotere with herceptin and then 12 additional months of herceptin. Also had rads, and take lupron + Arimidex.

I did enter one of the herceptin trials, but was randomized into the arm that didn't get the herceptin. So I dropped from the study and begged my doctor to give it to me and he finally relented. I do feel some guilt that I "cheated" by not staying in the study but I felt in my heart that I had to persue the herceptin. Honestly, I would have done nearly anything to get it.

If Mary H (above) is the same Mary H who e-mailed me way back when to encourage me to go on herceptin (and to take Arimidex instead of Tamoxifen) please know how grateful I am to you. I think of you often and will never forget you and how much you influenced me to press for the Herceptin. Thank you.

Love and hugs to all,
Lauren

Hi, I 'm stage 2b, er/pr +, 3 + nodes, multifocal, her2-3+, grade 3..diagnosed May 03. I am enrolled in the B31 trial as well, but got randomized to the control group. I got 4AC, then 4 Taxol. I did not get Herceptin, but so far I am fine. I can tell you I have mixed emotions about all the Herceptin talk. I wanted Herceptin, thinking I would be doing all I could possibly do to fight my disease. I was taken aback when I learned a few months ago people were getting Herceptin "off-trial". I inquired to my onc, as well as another at a major cancer center about taking the drug without a trial. It was not offered. I didn't even think it was possible since it was not FDA-approved for early stage. I'm obviously happy for anyone who has received this drug and living cancer-free. But I feel a bit cheated out of something I wanted. Sorry to get this off my chest. I also had a friend I met soon after I was diagnosed, who was also participating in the trial. I asked her many questions about it. Unfortunately she died this past fall after about a year and a half post-diagnosis. My heart breaks for her family, knowing the drug could have been accessible. I asked my oncs about taking the Herceptin now, after the fact. They did not have any clear answers as to whether it would help. They will be attending the Oncology conference next week. Hopefully I'll have some answers soon. Has anyone here taken Herceptin after they've finished all chemo? I'm grateful to have a forum to discuss this very issue. Thanks, Kelli

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

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.

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.