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Old 05-01-2005, 08:29 PM   #1
michele u
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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!
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Old 05-02-2005, 08:48 AM   #2
Jo
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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.
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Old 05-02-2005, 10:21 AM   #3
Margaret
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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
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Old 05-02-2005, 12:17 PM   #4
Mary H.
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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.
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Old 05-02-2005, 04:16 PM   #5
mutz
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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!
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Old 05-02-2005, 05:44 PM   #6
*_Trudy_*
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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
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Old 05-02-2005, 06:00 PM   #7
SusanAnne
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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
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Old 05-02-2005, 08:30 PM   #8
Rozebud
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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
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Old 05-03-2005, 07:39 AM   #9
*_Tessa_*
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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.
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Old 05-03-2005, 10:40 AM   #10
*_Christine Adams_*
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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
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Old 05-04-2005, 10:38 AM   #11
Audrey
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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
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Old 05-04-2005, 10:44 AM   #12
*_Julie_*
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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
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Old 05-04-2005, 01:41 PM   #13
lmarshall
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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!
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Old 05-05-2005, 06:13 AM   #14
Diane
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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
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Old 05-05-2005, 08:36 AM   #15
Audrey
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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
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Old 05-06-2005, 09:16 AM   #16
*_Beth_*
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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.
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Old 05-06-2005, 09:28 AM   #17
Bonnie
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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
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Old 05-06-2005, 07:16 PM   #18
Monica
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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
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Old 05-08-2005, 10:17 AM   #19
Lauren H
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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
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Old 05-08-2005, 02:55 PM   #20
kelli
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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
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