16 yr Trip Neg WITH METASTATIC BC Survivor!!
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Topic: 16 yr Trip Neg WITH METASTATIC BC Survivor!!
Posted By: CalGal
Subject: 16 yr Trip Neg WITH METASTATIC BC Survivor!!
Date Posted: Sep 11 2007 at 9:00am
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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 |
Replies:
Posted By: Nancy
Date Posted: Sep 11 2007 at 11:01am
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Hi CalGal,
I can hardly wait to tell Lori
 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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Posted By: PineHouse
Date Posted: Sep 11 2007 at 6:28pm
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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/ |
Posted By: CarynRose
Date Posted: Sep 12 2007 at 1:55am
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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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Posted By: CalGal
Date Posted: Sep 12 2007 at 7:09am
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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 |