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Old 07-20-2007, 10:04 AM   #1
Joe
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The lack of personal contatct information has been problematic to us also. If there is a genuine interest, we can add an extended registration form to our website. There are programs that can accomplish this with a high degree of security.

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Old 07-20-2007, 10:25 AM   #2
Andrea Barnett Budin
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Wink Contact Persons
Joe,

How would we (who are already *registered*) add a contact person to our info, giving their name, email address, phone # -- with their permission and prior notification of course.

It's a grand idea, I think most if not all of us embrace.

Please lead the way...

ANDI
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'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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Old 07-20-2007, 05:29 PM   #3
Donna
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Thank You, Joe
Hi Joe and All,

I think that most of us would want to participate in this. I know that many of us live near each other and this would allow the possiblity of creating actually meeting each other face to face or perhaps to lend a hand when it is needed. I also think how much it would mean to my husband and son if they heard from my friends here if something happened to me (god forbid).

Let me know if there is anything I can do to facilitate this list.

Thanks so much!

Donna
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