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16 yr Trip Neg WITH METASTATIC BC Survivor!!

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CalGal View Drop Down
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    Posted: Sep 11 2007 at 9:00am

Since my recurr & mets dx in 12/05, I've been searching for a long-time trip meg mets survivor .... and although I have not posted about it, the lack of finding her was disconcerting at best .... Finally, I met her!

I attended the CA Breast Cancer Research Program conf in LA last weekend.  I struck up a conversation with a woman at one of my tables ... 

She was a 16 year triple neg mets survivor!  

I don't cry easily and I almost did ...  it was such an overwhelming feeling of joy ... and FINALLY finding someone!  Of course, when she was first dx'd, it was only er/pr - (no such thing as a triple neg).   She was dx'd with bone mets in 1991 at age 42 ... and she's still here doing great!

When triple negs initially have mets, it's usually to the soft tissue rather than bone, and my understanding is that soft tissue mets are more serious ... but I'm still so happy to have met her!  

I had attended the MBCN (Metastatic Breast Cancer Network) conf last November at MSK, and was most dismayed that there were no trip negs on their panel of long-time mets survivors.  (Us trip negs were quite vocal about being overlooked and I don't think that will happen again).

Thought you all might find some joy in hearing about the long-time trip neg mets survivor!

As another mets friend of mine pointed out, it's likely that most long-time trip neg survivors first off wouldn't know they are "triple negs" since that came about with the finding of one's HER2Neu status (which I believe was only in the last 10 yrs or so) ... and they would likely not be involved in bc activities, since they would not be on any type of treatment.

CalGal

BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2007 at 11:01am
Hi CalGal,
I can hardly wait to tell LoriClap
 
I read on this site that the term "TNBC" was just coined 2 years ago.
 
I do cry easily anymore and I am crying now!!! Thank you for sharing this with us.
Hugs,
Nancy
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PineHouse View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote PineHouse Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2007 at 6:28pm
Yea!
There IS hope, even for those of us who are metster!
 
CalGal,
Thanks so much for sharing this info.  Makes my day.
 
Do you know if this lady has been NED for 16 years, or does she have a stable mets for 16 years?  Did she share what kind of treatment she got for her bone mets?
 
Stage IV lung-06/06 brain-12/08 BRCA1 TNBC
Avastin+Taxol,Carboplatin,PARP-Inhibitor,Navelbine+Xeloda,Avastin+Ixempra,Doxil+Cytoxan
Currently Abraxane+Gemzar (3/09)
http://pinehouse.wordpress.com/
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CarynRose Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2007 at 1:55am
CalGal,
 
Thank you so much for posting this.  It gives us so much hope.  As someone with mets to the lungs, I am still searching for a long term Triple negative with mets there, but I know that there will be at least one more in the future -- ME!!!  G-d willing.
 
CalGal, would you please post this on the FORCE message board?  There are several of us over there who are starving for such information, especially now.
 
Hugs and best wishes,
Caryn
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CalGal View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CalGal Quote  Post ReplyReply Direct Link To This Post Posted: Sep 12 2007 at 7:09am
Good idea Caryn.  I just posted at FORCE!

CalGal
BRCA1
9/04 Bi-lat lump, clear SNB
38x Rad'tn
12/05 Recurr bc & mets to liver
06 the year of chemo
NED for 13 mos until 7/07
Lung met. PARP trial until ...
2/08 Liver mets again
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