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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 09-30-2005, 09:49 AM   #11
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Blood Test Available for HER-2/neu

There is a blood test for HER-2, for the monitoring metastatic breast cancer patients. Herceptin does not interfere with test results. The blood test can be done over the course of the disease. It allows physicians to make therapy modifications. It is available at Quest lab and other labs as well. It does not replace having a biopsy done but is used after that.
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Old 10-20-2005, 08:26 AM   #12
MarshaB
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Talking reply

http://wcco.com/health/local_story_292145011.html

Here is alink for an interview with myself regarding the news about early stage Hercptin treatment!



bless you!

marshab
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Old 10-23-2005, 06:36 AM   #13
Janie
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Hi everyone. I was in the arm receivng Herceptin after Taxol. Diagnosed 3/11/04. Began Herceptin November of 2004. Will finish 52 weeks mid November of 2005. Stage 3, ER/PR-, HER+++, 6/19 nodes involved.
No recurrence.

Janie
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Old 10-27-2005, 03:59 PM   #14
sherri
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I had Dose Dense AC+Taxotere for 6 cycles from Jan to beg of April, 10 days after the last chemo simple Mastecomy, after 45 days started Radiation every day for 20 days and Herceptin every 3 weeks.
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Old 10-29-2005, 10:59 AM   #15
Toubev
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I was not on a trial with Herceptin but started it 4 mos after finishing chemo.
Unfortunately for me, I was diagnosed with congestive heart failure before I was due to finish my treatment. It was specifically due to the herceptin. I am now with a new onc who is taking a wait & see attitude. This was my 2nd b.c. with a higher rate of recurrence than the first. My 2 yr anniv passed but I was 10 yrs free after the first b.c. Am going for genetic counselling. Hoping meds will get my heart stronger. Not much else you can say. I try not to worry but take each day as a bonus.
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Old 05-04-2005, 10:38 AM   #16
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   #17
*_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   #18
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   #19
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   #20
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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