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Old 04-13-2004, 08:58 AM   #1
kristen
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I WAS DIAGNOSED WITH 100%HER2. I GOT PUT ON STUDY WITH HERCEPTIN, TAXOTERE & CARBOPLATIN,6TX.HAD A MASECTOMY AND HAD 3 NODES POSITIVE OUT OF 12. I HAVE OPTED FOR RADIATION. I WILL STILL BE ON HERCPTIN TIL DECEMBER. AM I DOING ALL I CAN. I WANT TO BEAT THIS THE FIRST TIME. DOES ANYONE KNOW ANYONE ELSE WHO IS 100% HER2, DOES ANYONE HAVE ANY IDEA IF MY CHANCES OF REOCCURANCE ARE HIGHER. I KNOW I AM ONE OF THE LAB RATS,BUT I JUST FEEL LIKE SOMEONE SHOULD KNOW SOME STATISTICS ON HER2, THAN 50/50 CHANCE OF IT COMING BACK.
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Old 04-13-2004, 12:40 PM   #2
christine
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Kristen,
I do not know what you mean by 100% HER2, but you are part of a very important clinical trial to determine if Herceptin can prevent a recurrance of cancer.
Being a "lab rat" may in fact prevent a recurrance.

Hugs
Christine

PS, All that "Views" means is that someone had read your post and not replied.
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Old 04-13-2004, 01:37 PM   #3
Lisa
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There is no actual 100% Her2. This probably means you overexpress the Her2 protein to a high degree (for example, Her2+++). If this is the case, Herceptin is your best friend. It targets this protein and halts its growth. Combined with your chemo and radiation, it sounds as though you're doing everything you can possibly do. Feel good about that.

Love and healing light,

Lisa
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Old 04-13-2004, 03:12 PM   #4
Lyn
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Hi there, yes you are on a good combination, some of us have tried just about everything once and I am after 6 years of constent treatment starting on Carboplatin with my Herceptin tomorrow, you could ask them to add Iressa to it as well it is in the Herceptin family and only come to light the last couple of years, I have already faxed my Onc and told him if he has any around I will try it, he used it last year on a trial with ladies whose mets went to their lung with success. Taxotere on its own for me did nothing, the month after I finished it more lumps came back.

Hugs Lyn
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Old 04-13-2004, 07:08 PM   #5
vicki
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It certainly sounds so!
and don't think of yourself as a lab rat... think instead that you are in the best position to know all about the latest cutting edge treatments.
Vicki
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Old 04-14-2004, 02:59 AM   #6
Paul
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Kristen,

"TCH" or Taxotere, Carboplatin, and Herceptin is an excellent adjuvant clinical trial. It has one of the highest response rates of any treatment based on Stage IV testing. If you want to beat this thing at the outset, you have chosen wisely. As everyone has noted, you should obtain your HER-2 status measurement based upon either IHC testing (usually indicated by 0, +1, +2 or +3 measure) or FISH testing (usually indicated by negative or positive measure).

Although most HER-2 positive breast cancer patients are "estrogen-negative," you did not indicate whether your cancer was estrogen-negative or estrogen-positive. If you are ER+, you should speak to your doctor(s) regarding the use of anti-estrogen treatments such as tamoxifen (for premenopausal use), or Arimidex, Femara, or Aromasin (for postmenopausal use).

As for your lab rat feeling, be aware that clinical trials have helped countless patients and saved countless lives. I believe that your trial is designated "Phase III," and is considered relatively safe. A lot of very bright people construct these trials, and the life they help this time around my very well be yours.

I wish you great success with your treatment.

Paul
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Old 04-14-2004, 03:18 AM   #7
KRISTEN
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THANK YOU ALL FOR YOUR RESPONSES. I AM SORRY LAB RAT DOESN'T SOUND GOOD, BUT I USE IT JUST TO LIGHTEN UP THINGS I USE HUMOR AND A GOOD ATTIUDE TO KEEP ME GOING. SORRY. I KNOW THIS IS A VERY IMPORTANT STUDY AND I THANK THE HEAVENS I GOT ON IT. I WANT WOMEN EVERYWHERE TO BE ABLE TO HAVE IT AS FIST LINE DEFENSE OF CARE, IT SHOULD BE THE STANDARD OR CARE WITH INSURANCE COMPAINIES.
AS FOR MY BEING 100% HER2. I WAS NEG FOR ESTROGEN AND NEG FOR PROGESTRONE RECEPTORS, THEY WERE 0% HER2 PROTEIN (CLONE CB11)2.6. THEN THEY SENT IT FOR A FISH WHICH CAME BACK 7.6 AMPLIFIED HER2 BY FISH. SO HERCEPTIN IS MY TAMOXIFAN, I DON'T RESPOND TO ANYTHING ELSE. WHEN I CAME TO THIS SITE, I THOUGHT I WOULD FIND SOME OTHERS LIKE ME. THIS IS A GREAT WEB SITE. THANK YOU ALL FOR RESPONDING. TAKE CARE AND BEST WISHES LOVE KRISTEN
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Old 04-14-2004, 05:07 AM   #8
Paul
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Kristen,

Believe me, we actually do have a good sense of humor on the board. It has been a bit of a serious time on the board with a few situations that involve brain mets diagnoses and the recent loss of a few brave women.

I hope you were not put off by the posts relating to your "100% HER-2" comment. Most of the board participants are generally familiar with the "standard" measure for IHC and FISH testing.

Actually, your comment re "100% HER-2" is fairly close to mark. You indicated that your HER-2 status (by IHC-CB11 testing) was 2.6. An IHC +3 designation usually means that over 90% of the tumor cells within the sample "lit up" due to staining, thereby revealing the presence of HER-2 overexpression.

Your FISH measurement was marked as a 7.6 amplification. Although most folks have come to know FISH as an absolute "positive" or "negative" designation, the test is actually more detailed due to the fact that there exists a range of FISH positivity.

FISH uses molecular genetic techniques to create a fluorescent DNA probe that produces a bright microscopic signal when it selectively attaches to the gene specific complementary DNA (e.g., HER-2). A different DNA probe attaches itself to the chromosome 17 centromere (CEP 17). The signals appear as orange and green fluorescent colors for the HER-2 gene and chromosome 17, respectively. This enables a ratio of HER-2 to chromosome 17 signals to be calculated.

A HER-2/CEP 17 ratio equal to or greater than 2.0 is considered amplified or "positive" by FISH. At a ratio of 7.6, you are clearly FISH positive and then some. Herceptin should work quite well for you.

Good luck with your clinical trial and let us know how things go.
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