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Newcomers Club / Welcome Wagon With the stellar results of the adjuvant clinical trials of Herceptin, we have had many newly diagnosed patients visiting the HER2 Support Group. This Forum is just for them to post. "Old Timers" should only answer existing posts, but not create new

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Old 09-13-2006, 11:43 AM   #1
Quilter1
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Smile Part of Herceptin Clinical Trial - New to the group

I have appreciated being able read the comments and information provided by everyone and decided to join the group. I hope that my story and views can help someone someday.

I am 48 and was diagnosed with Stage I invasive breast cancer at age 47. Her2 positive overexpressed with ER/PR (++). My tumor is the most aggressive classification. At the time I was diagnosed, I was able to participate in a clinical trial using Herceptin on individuals with Stage I diagnosis. Until recently Herceptin was used in later stage treatments only. I finished my chemotherapy last summer and year long Herceptin treatments this summer. I am on Arimidex for a year now with at least 4 more to go. Tough side-effects with Arimidex but worth the protection if it helps. I had no side-effects from the Herceptin. My heart was closely monitored throughout the treatment for any changes. Herceptin does carry a heart risk. Again, no problems encountered.

I appreciate everyone's patience as I learn how to post and reply.
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Last edited by Quilter1; 09-13-2006 at 01:00 PM.. Reason: Clarifying Title
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Old 09-13-2006, 07:46 PM   #2
Ruth T
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Hi, I'm wondering if you did weekly herceptin or every 3 weeks. and did you start it during/with chemo?
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Old 09-14-2006, 06:31 AM   #3
saleboat
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Hi Quilter,

Welcome to the site. I was just diagnosed when the news about Herceptin came out and it became widely used for early-stage patients. It seemed like a good news, bad news kinda thing-- we had a really aggressive cancer, but had access to a drug that improves the chances of staying cancer-free for a long time.

Regards,
Jen
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dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com

"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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Old 09-14-2006, 12:15 PM   #4
Quilter1
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I am new to this so I hope that I get the message to the right folks. Ruth T. I took the Herceptin every 2 weeks with my Taxol treatment which lasted 8 weeks. Once the Taxol portion of my chemo was over, I took the Herceptin alone for the remaining 12 months on an every 3 weeks schedule. Are you taking herceptin now? I feel so lucky to have been able to be selected for the clinical trial that is testing the use of Herceptin on early stage. Lets hope the results are great and that Herceptin will become a routine treatment for the "early birds".

Sailboat....thanks for the welcoming comments. I agree with you 100%. Herceptin appears to be a great source of hope for many of us. Quilter1
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Old 09-14-2006, 05:39 PM   #5
Ruth T
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Hi Quilter, I am new to this too, so I hope it is sent as intended. i had me first taxotere, cytoxan last thursday and was scheduled for my first hercetin today, but declined it. I had been in a lot of combined pain, from my port being put in the nite before chemo, and the neulasta the day after. I just asked if we could wait a week since I will be getting it weekly for a year, so My body and mind could adjust to the effects of last week.
Did you have muga scans throughout the herceptin? And do you know why some are weekly and some everry 3 weeks? Thanks, RuthT
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Old 09-15-2006, 08:26 AM   #6
Quilter1
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Ruth T. I did have MUGA scans routinely throughout my treatment. I am finished with the Herceptin and have my next MUGA scan in Novemeber. I am part of a clinical trial with Herceptin. There were a total of 4 MUGA scans planned for me. I think it is a matter of convenience as far as why the Herceptin is weekly or every 3 weeks. I originally stated that I had my Herceptin every 2 weeks but it was the Taxol every 2 weeks and the Herceptin every week until the Taxol was done. After that they switched me to the 3 week routine for convenience. Good luck getting started with Herceptin. It really is nothing compared to the chemo. I am not aware of having any side-effects from Herceptin.
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Old 09-16-2006, 08:37 AM   #7
Ruth T
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Quilter1,
What is the clinical trial for? Any specifics they are studying? I'm glad to hear the Herceptin went well. I've been a bit nervous about starting it during chemo, having only had the one treatment so far, but I know they say that they think it is more effective when given with the taxotere. Did you get the neulasta after chemo treatments?
Thans, Ruth
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Old 09-17-2006, 07:43 AM   #8
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Ruth T. The clinical trial was testing a new regimen for treating aggressive HER2 BC. The trial was a Phase II. They were testing dosages to see if the maximum doses of chemo they suggested for my type of cancer was safe. They watched side effects reactions closely. They are watching to see how effective the combination treatments are on HER2/neu BC. They were watching the effects on the heart the most, hence the 4 MUGA scans. I did have Neulasta so they could do the every 2 weeks routine vs. every 2 weeks. I had my treatment one day and returned the next day for a simple shot in the arm. I was out in 5 minutes. I know that everyone is different in their tolerance levels, but go for the Herceptin with your treatments. The Herceptin does not make you feel bad. They watch the heart's reaction. Remember the percentage of people who would have a reaction is very low. Good luck. This treatment regimen is going to be easy compared to the first cycle (if you had A/C). You might still be a little tired since that side effect can be cummulative .
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