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Old 06-19-2006, 12:01 PM   #1
Tom
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Found interesting new website

I just received a heads-up from one of the many websites I have cruised for information on HER2+ BC. Site does not seem to be up and running just yet.

http://www.neunews.net/
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Old 06-19-2006, 12:14 PM   #2
StephN
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Wink Serum HER2

Thanks, Tom -
This is exactly what was mentioned at our meeting in San Antonio with the Dako/Bayer reps in the presence of Dr. Carney.

You will note that "DAKO" is a logo prominantly displayed at the top of the site. This company works with Bayer in distributing the test. This is the same test that Dr. Carney had a major hand in developing and was kind enough to answer our questions here this spring.
Guess they realize that surfing the net is how a majority of cancer patients get their info these days and figured that this will widen the audience for this blood screening.

We helped work on a brochure for docs and their patients after San Antonio, and this is the next step. Maybe there will be some clinical trials announced that use this test to monitor patients' progress.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 06-23-2006, 09:43 PM   #3
Marily
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have a question on the test results

After reading here about following the numbers of her2nue expression, my oncologist let me have this test run. I was below the 12.5 number which is a good normal. Now we are looking for what to do next. I am on Herceptin, and 7.5, how often do we test and can I stop Herceptin until the numbers go up again? We are trying to see if I can graff this number and watch for a chance of reocurrance? I never had any tumor markers do anything? So cannot use those. I am having difficulty with Herceptin.. If I could watch for the overexpression and get Herceptin before 12.5?? would that be plausable? Does anyone know anything about this????
looking for help,
Marily
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Old 06-24-2006, 10:38 AM   #4
MCS
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Huh?


I'm sorry. What is this expression of 12.5 and 7.5?

Thank you

MCS ( maria)
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Old 06-29-2006, 09:23 PM   #5
carlsoj
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Site is now up

Obviously a website by the drug company, but certainly something to discuss with your doctor.
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Old 06-30-2006, 05:56 AM   #6
Cathya
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Marily;

Gina has metatastic disease and runs the test immediately prior to getting each of her herceptin treatments.....that is within hours before her treatment. She tracks the numbers and should she start to see them rising over a couple of treatments she gets a booster dose.....like you have in the very beginning of herceptin. Her view is that her disease at this point is starting to develop and form a tumor somewhere and she wants to knock it out before it takes root and it becomes more difficult to attack.....that is to say you would need chemo theraphy. She is hormone negative so it is a somewhat more straightforward situation (as we hormone positives could be having a tumor develop with no increase of the her2 in our blood but rather having the tumor fed by hormones) but that is why another test should be run at the same time....i.e. the CA15-3 or others. So far she has been able to control her disease very well using only herceptin for, I believe, around 6 years. You could do a search of Gina's posts and read them.

Cathy
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Old 06-30-2006, 10:57 AM   #7
Marily
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new testing

Thank you so much for the information. I have been trying to find a way to use the testing to my benefit and convince my Dr also. Six years is GREAT... that is where I am also. I am heading right now to read the other site. I am so very glad I found this site, everyone is helpful and so very nice here.
Hugs Marily
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Old 06-30-2006, 11:43 AM   #8
Marily
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When I recieved my test results the normal for the test was 12.5 under that was ok and mine was 7.5. Over the norm is considered over expression of the Her2nue. Marily
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