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Old 07-17-2007, 12:23 PM   #227
Andrea Barnett Budin
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Join Date: Oct 2005
Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW...
Posts: 1,904
Wink Flushing Tamoxifen

Hi Astrid,

July '95 was old school, different vocabulary and testing. I was ER/PR -- borderline. So what does that mean?, I asked. It means we can try you on Tamoxifen, in the hopes that you will derive some benefit from it. I was 50 yrs old and postmenopausal (after 10 yrs of perimenopause, irregular periods after being ev 28 days betw 10AM and 11AM all my life, practically hemoraghing when I got my period and having it for 10-14 days + hot flashing all day).

My dear, longtime friend Rochelle was dx 4 mnths after me. IDC. ER/PR+. After chemo she was put on Tamoxifen.

In Aug. '98 when I metastasized into liver I was found to be ER/PR- and told to flush Tamoxifen down the toilet. That it could have caused me to recur. I was also at that time, after *asking* to be tested for HER2, hoping to get in to a Herceptin trial if + as it was not yet available to the public -- I was found to be HER+ 80%, as they then put it.

Herceptin was fast-tracked by the FDA for the aggressive Her2's who were in a *lottery system* to try and get the drug and save their lives.
It became available to all Sept 28, 1998. I began taking it, in addition to Taxotere started in early Sept as I could not wait to get in to a trial w/fast growing tumors within wks after biopsy, in Nov '98 and have remained on it -- to prevent the aggressive gene from overproduces, keeping it in line and me STABLE (since '99). I believe going off Vit H would mean I'd have many recurrences to deal w, w/chemo + Herceptin to keep on fighting. Staying on the *easy* chemo, Herceptin (which is a monoclonal antibody) is the path I'm sticking w/. My oncs all concur. My insur co is not complaining. My ECHOs keep me informed re any heart problems. Dr. Pegram told me in Feb '06 out in Calif that if I was going to have heart problems they would have already shown up.

Hope this answers your questions and concerns, Astrid. If I can add anything, just ask. I am here for you, and any one who is in need of information, support and/or inspiration. Sending you loving energy...
ANDI

BTW, Rochelle remained on Tamoxifen for 6 yrs, not willing to give it up at 5, believing it was keeping her alive and well. Has now been off it 6 yrs and no recurrence.

Two different situations. She was lucky Tamoxifen could work for her. Though HER2 is highly aggressive, it is a form of bc that is responsible for 20% of bc. Knowing what causes my bc is a +. Because they've isolated the gene and developed a targeted med (Herceptin) to prevent the defective gene to misbehave. It's the good news and bad news all rolled in to one. But I am grateful for the Herceptin smart bomb with each new day. I personally hugged Dr. Dennis Slamon and thanked him for saving my life. Wow! Was that a thrilling day! For me and for him. He was elated meeting me, seeing the fruits of his labor.
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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