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Old 11-15-2008, 10:43 PM   #1
DianneS
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Question Her2+++??

Anyone know the significance of having her2, 3+++ ?
Any articles I can look at?
Do the pluses indicate that herceptin will work for me?
How do I know the Herceptin is working? Is there a measurable test to determine that?

Questions & more questions,
Diannes
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Old 11-16-2008, 09:33 AM   #2
dlaxague
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There's a lot of information on this site ( try: http://www.her2support.org/her2.html ) and others (breastcancer.org is also a good place) about what it means to be HER2 positive. You'll get a better explanation reading that information than from our replies.

Or did you mean the specifics of three pluses rather than two pluses? The test that gives the result in pluses is the IHC test for HER2. A "FISH" test is considered more accurate and it gives the result as one number (although technically it's a ratio). Some labs and/or oncs will not retest a 3+ IHC using FISH. You can ask your onc to double check with FISH but most IHC 3+ are truly positive.

It does not seem that the degree of HER2 positivity has any relation to response to Herceptin. There was a small study posted here recently that said that they did see a relationship but there have been many larger studies that did not, and the experts say that they have no accurate way (yet) to predict who will be in the roughly 50% of those who respond to Herceptin.

I've wondered if the degree of HER2 positivity has any relation to prognosis (in the absence of Herceptin). Anyone know?

Debbie Laxague
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Old 11-16-2008, 06:06 PM   #3
DanaRT
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Good questions. I will ask when I see my onco on December 5th. I wonder if I will go up to 52 weeks of treatment-which means another infusion the day after Christmas.
My Her2 + number was 3.8. The surgeon told me anything above 2 meant positive now that I know more I wished I would have asked more questions.
__________________
-Dana-

]
Diagnosed - Nov. 2, 2007 at 45
Lumpectomy - Nov. 13, 2007
Tumor 1.2 cm
Stage 1 Grade 3
ER/PR - Her2 +++ (3.8)
Taxotere/Carboplatin/Herceptin- 6 rounds
Neulasta
Radiation 33 treatments - will be done 6/6/08
Herceptin through 12/08
12/07 MUGA 61%, 4/08 MUGA 60%, 7/08 MUGA 64%
three wonderful daughters, a terrific husband,
Life is Good
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Old 11-17-2008, 12:25 AM   #4
Savta
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In the October issue of Reader's Digest, they tell of the new vaccine that is in the making. (Don't get excited--it's 5 years away...) But they say that Herceptin is most effective in women with high Her 2 levels. The big hope of this vaccine is to help women with lower levels of Her 2.
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Old 11-17-2008, 03:33 AM   #5
madubois63
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The one thing I can tell you (from my experience) is that I am still here after 9 years and I am Her2+++. I am ER/PR+ and fought stage IV Inflammatory (the worst of the worst when it comes to breast cancer). It's been in my liver once and lungs twice (presently). Both times, I responded/am responding rather well to Herceptin.

Everyone's cancer is different, so do NOT listen to anyone of your
well meaning friends/acquaintances that tell you about someone they know and how easy it was, how hard it was or how they died a gruesome death. That is not what you need to hear right now. what you do need is to ask the right questions of the right people in the right place (which you are doing)...And do NOT listen to statistics. They are usually five years old based on treatments that are five years old.

Since your on Herceptin, you probably had a MUGA (aka gated pool) scan of your heart. That should be repeated every 3 months. Herceptin (like some chemo's) can damage your heart. If your rating goes down, your onc may give you some time off from the Herceptin, recheck your heart with another MUGA and then start the Herceptin again. Many of us have had this experience. I had to take a break the first time I took Herceptin. After 3 months, my heart was stronger than ever, and I started the Herceptin again. If you haven't had a MUGA scan prior to starting Herceptin you need to get one immediately and question your onc as to why you didn't get this important test.

After 3 months on the Herceptin, your onc should order either a PET,
CAT or a PET/CAT (one test that does both at the same time). This will be compared to prior tests (again, if you haven't had one done prior to starting chemo/Herceptin you need to question the onc and maybe consider getting a new onc). Ask for a copy - actually you should be getting copies of ALL your reports, including pathology from the original biopsy. I don't know your history (surgery), but if the bc is/was anywhere outside of the breast, the scan should answer your question whether the Herceptin is working. Tumor marker tests are not always accurate (never worked for me), but your onc should be running that test too. If there has been an increase or decrease, that could also determine whether the Herceptin is working too. Talk to your onc and ask which tests he/she is/will be using.

Keep asking all the questions you have...

__________________
Maryann
Stage IV Inflammatory BC 1/00
Mod Rad Mastectomy 24nod/5+
Adriomycin Cytoxin Taxol
Tamoxifen 4 1/2 yrs
Radiation - 32 x
Metastatic BC lung/liver 10/04
thorocentesis 2x - pleurodesis
Herceptin Taxatiere Carbo
Femera/Lupron
BC NED 4/05
chemo induced Acute Myeloid Leukemia 5/06
Induction/consolidation chemo
bone marrow transplant - 11/3/06
Severe Host vs Graft Disease of liver
BC mets to lung 11/07
Fasoladex Herceptin Zometa Xeloda
GVHD/Iron overload to liver
Avascular Necrosis/morphine pump 10/10
metastatic brain tumor
steriotactic radiosurgery
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Old 11-17-2008, 12:12 PM   #6
StephN
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Hi -
Regarding your question of whether a high HER2 number will result in better response to Herceptin, I have heard from the top researchers at the cancer meetings (most in private conversations) that they DO think that if you have a high HER2 factor, the chances are very good for good response.

One thing you should be aware of is that there are FOUR known HER pathways. The HER 2 happens to be the target for Herceptin. Perhaps there is a way that a very strong HER2 signaling overshadows the other HER pathways allowing a better response with Herceptin therapy.

I spoke to more than one researcher at the AACR meeting last April who is working on this very question. It would be great to get some results of their studies!

Our kind of cancer can be very "smart" and figure ways to utilize the other HER pathways and circumvent the number TWO route, thereby rendering Herceptin useless against the cancer in its new incarnation.
__________________
"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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