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Old 12-13-2015, 11:18 AM   #1
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
The metastatic breast cancer alliance

On Facebook.

Led by a woman (Corrie Painter), who is a mestastatic bc patient and doctor with a team -- seeking to increase research for all of us.

I joined.

It's a simple form, sharing your information, to go into a data base. I no longer have tissue samples, but still could join.

The Metastatic Breast Cancer Project is a research study being launched and funded by the
Broad Institute of MIT and Harvard, a nonprofit academic research institution whose mission
is to dramatically accelerate the understanding and treatment of disease. The study is being
conducted in collaboration with Dana-Farber Cancer Institute as well as our advocacy
partners. With this project, we are exploring a new approach to genomics research in which
we partner directly with patients with metastatic breast cancer in order to speed important
discoveries.

If you have any questions about this study, please reach out
to us at info@mbcproject.org or 617-800-1622.

Advocating for ourselves, the patients. I am all for that!

It is brand new and they have about 800 members already.

MBC -- THE METASTATIC BREAST CANCER ALLIANCE.

A new Broad Institute / Dana-Farber research initiative to partner directly with patients to accelerate discoveries in metastatic breast cancer

http://MBCproject.org/

https://www.mbcproject.org/Metastati...physicians.pdf


Andi
__________________
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...

Last edited by Andrea Barnett Budin; 12-13-2015 at 12:55 PM.. Reason: add informative info
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