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hayleyd View Drop Down
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Post Options Post Options   Thanks (4) Thanks(4)   Quote hayleyd Quote  Post ReplyReply Direct Link To This Post Topic: Welcome From TNBC Foundation
    Posted: Jun 13 2007 at 12:45pm
Hi everyone! Welcome to the TNBC Foundation’s website. We are thrilled that so many women from around the globe are visiting our site and sharing their stories. We wanted to introduce ourselves and tell you a little about who we are and what we hope to accomplish. We are a group of young women who founded this organization in response to our close friend’s diagnosis with triple negative breast cancer. Our friend’s name is Nancy. She is 37 years old and has a 5 year old daughter. She has been battling this cancer for over two years. After Nancy’s diagnosis we desperately searched for information and answers about this type of breast cancer, but so little was available. Research in this area is minimal and most people are completely unaware of the existence of triple negative breast cancer. We founded this organization to increase awareness and to raise money for research targeted specifically toward triple negative breast cancer. We were then able to successfully recruit some of the top medical minds in the field to advise us and to guide us (one of our Advisory Board Members, Dr. Eric Winer, was recently named Chief Scientific Advisor to the Komen Foundation). We started this website hoping to reach out to women suffering from triple negative breast cancer and to the public at large to ignite interest in our cause. We added “TNBC Talks” to provide a forum for women diagnosed with triple negative breast cancer and their loved ones to connect and share information. We are very proud of what the foundation has been able to accomplish in such a short time. We recently hosted our inaugural fundraiser entitled, “Peace, Love & A Cure” in Nancy’s honor, which was an enormous success – raising more money than we ever thought possible – OVER $200,000! We will be posting more details about the event on the website shortly. We are hopeful that this is only the first of many successful fundraising efforts and we look forward to involving more members of the TNBC community in future events. As a relatively new organization, our website is continually undergoing revisions. We are working to make it even more informative and, we hope, more helpful to our visitors. To that end, we are looking to add a Spotlight Stories section, which will highlight the experiences of certain visitors to our website. We have received emails from many women diagnosed with triple negative breast cancer who are living full and happy lives. We hope their stories can offer strength and hope to others living with this disease. If you would like to share your story, please let us know.    We look forward to hearing from you. Please let us know if you would like to get involved. Peace, Love & A Cure, Hayley, Allison, Andrea, Sharon & Claudia

Edited by hayleyd - Aug 09 2007 at 4:28pm
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DEEAUS16 View Drop Down
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Post Options Post Options   Thanks (4) Thanks(4)   Quote DEEAUS16 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 14 2007 at 10:37am
THANKS FOR THE SITE.  I STUMBLED ONTO IT AS I WAS LOOKING FOR INFO ON TRIPLE NEGATIVE BC.  I ALREADY APPRECIATE THE OTHER WOMEN WHO HAVE SHARED THEIR JOURNEY.  DEANNA
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Post Options Post Options   Thanks (2) Thanks(2)   Quote 2kidzmom Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2007 at 9:44am
Smile  Thank you Hayley for having the foresight to start this Site.  I did not realize at my time of diagnosis how strongly the triple negatives are differentiated from other breast cancers and how few of us there are.  I never even heard the word "triple negative" until I was almost done with my chemo. 
 
There really does need to be much more research done in this area.  Maybe then we can find something that impacts us as much as Herceptin has impacted the HER-2+ women. 
 
Thanks again!
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 15 2007 at 4:56pm
Big%20smileThanks so much girls for this website.  I have been searching for something like this for 2 years!  When I was diagnosed a little over 2 years ago there was very little information about triple negative disease.  It is so nice to hear from people that are triple negative and are doing well.  Everything you read about our subtype of breast cancer is always so negative.  I appreciate all your doing to try and raise awareness about triple negative disease.  We need more research and it's foundations like this one that will get us to the forefront!TongueSmile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BeeCee Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2007 at 6:55pm
Hi Hayley,
 
I want to tell you that I appreciate this forum so much! I was given the link to it by a member of another forum. This is exactly what I have been needing as it is so hard to find info on triple neg BC. I belong to other boards, but they do not focus on triple negs. I didn't even understand what this was until I was well into my chemo. My onc never talked about the significance of it. I will be checking in often to read & post.
 
Hugs,
Bonnie Thumbs%20Up
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2007 at 11:03am
This is a wonderful website. I was diagnosed with Triple Negative Breast Cancer, with the news given to me in a very flippant way by my surgeon. He did not even tell me that I was Triple Negative, but simply said that I had a very 'active' cancer. It was only while I was in hospital that I read my notes and discovered for myself. (I am a RN). I had worked in an oncology ward for some time during my nursing days and have witnessed the effects of chemotherapy, so I am not at all looking forward to starting it in September 26 '07.
 
It is for this reason that I am looking for anyone who has gone down the alternative route, as I am seriously considering this way, especially due to the fact that my surgeon informed me that the benefits of chemotherapy are only 5% and if it returns 'there is nothing to be done'.
 
I have Stage 1, Grade 3 (TNR). I had a lumpectomy, lympth node removal (all clear), followed by mastectomy.
 
Thank you all again for this wonderful site and I will always remember Nancy in my prayers.
 
Marie   Smile
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BeeCee Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2007 at 7:57pm
Hi Marie, I am a newbie as well. I agree that this is a wonderful website.
 
My dx is the same as yours (see my signature below) This is what my onc told me before we set up my treatment plan: the cure rate would be 70-75% with surgery+rads and it would be 82% with surgery+chemo+rads. I didn't hesitate at all........I told him to do everything he could to get me over this.
 
I am surprised to hear that your surgeon told you that if cancer returns, "there is nothing to be done". My understanding is that you do all you can to keep it from returning (surgery, chemo, rads) but if it does, I think there is most definitely a lot that can be done. I have met ladies on other boards (triple negs) that have mets and have been stable for years.
 
While it would be nice if we had some magic pill (like tamoxifen) to take, that is not the case for us. I have read, though, that chemo is much more effective on ER/PR neg than ER/PR pos, so we have a better chance of nipping it in the bud without having to take meds for 5 or more years.  
 
Good luck with whatever route you decide to take. Treat your cancer the same way it has treated you. Kick some butt!
Bonnie, age 63, Dx on 8/7/06 IDC stage 1 grade 3, triple neg, lumpectomy x2 of L breast, 8 nodes neg, 4 x AC & 4 x Taxotere, bone scan 2/07 (neg), 33 rads, Tx finished 5/7/07, Mammo 8/9/07 (normal)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote glenine Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2007 at 1:55am
Hi All,
      Newbie to this terrific site.But an oldie but Goodie to triple neg BC!
Stage 4 right out of the BC shoot.Met to lung along with a 2.3 cm Gr3 tumor..

Negative nodes ,Now you all must looked a little puzzled....HUH??
My breast cancer is very rare,Its called,Metaplastic Carcinoma and usually like to travel through the bloodstream.(Why Nodes were Neg).....Vats Proceedure was done on the lung met and I recieved high dose Adria,follwed my a double mast,(One was prophlactic).then followed by Taxatere. Guess what..It worked.I have been NED since 2001...Looking forward to posting often.
Love and prayers.
glenine
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2007 at 11:20am

Hi glenine and a very warm welcome to you  Many congratulations to being NED since 2001Clap

 
Please have a look around and don't forget to vote in our polls.  It's always so good to hear good news and that the meds are working! 
The positive news is wonderful and I'm very happy for you, whoohoo.
We look forward to hearing from you again,
 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BeeCee Quote  Post ReplyReply Direct Link To This Post Posted: Sep 02 2007 at 4:00pm
Hi and welcome, glenine.
 
I'm a newbie as well. What an uplifting post from you, you made my day! Clap Please come back and visit often. Isn't this a wonderful forum? So many knowledgable, caring ladies here. It was recommended to me on another board. Now, I come here daily.
 
Hugs to youHug
Bonnie, age 63, Dx on 8/7/06 IDC stage 1 grade 3, triple neg, lumpectomy x2 of L breast, 8 nodes neg, 4 x AC & 4 x Taxotere, bone scan 2/07 (neg), 33 rads, Tx finished 5/7/07, Mammo 8/9/07 (normal)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote glenine Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2007 at 9:53am
Thanks Bee Cee.....

I am checking in every day too!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shirleyb Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2007 at 8:57am
Confused I recently was diagnosed with triple negative breast cancer and while I was looking for information - I came upon this site and it is a welcome relief to be able to share my feelings.  This is my second diagnosis of breast cancer - the first in 03 with 6 rounds of TAC, mastectomy and thirty days radiation.  It was an estrogen positive cancer.  I was hoping to reach my 5 year clean day and this cancer showed up on an MRI 7/05 and a lumpectomy was performed 4/07.  Since the tumor was small, they felt it was not anything to be concerned about.  I had four out of 15 positive nodes.  I am on my 7th week of Xeloda and will start radiation in two weeks with chemo after of platinum and gemzar for 6 rounds of 2 doses.
I am really nervous and scared about this cancer coming back.  Does anyone have any feedback on this treatment ?  Thanks.  Shirley
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2007 at 9:34am
Ohhh hi Shirleyb and a warm welcome to you. 
 
I'm so sorry about your second diagnosis, that really stinks.  I almost made it to my 5 year too, was diagnosed 4 1/2 yrs later.
 
Shirley I am not familiar at all w/the meds that you are and will be taking but have seen some articles on them and they sound like they have alot of promise.
 
I hope someone will jump in with some good information for you.
 
I know you're nervous and scared about the c coming back, me too but we've got to fight back and kick it this time.Hug
 
You can share your feelings here anytime, this is a good bunch of people.
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Sep 08 2007 at 11:31am
Hi Shirley,  You may want to post your question under discussion forum, you'll probably get more feedback.  Also if you search this site with the name of your chemos you can find past posts that includes those names. 
I did AC+T dose dense, but  I know there are other chemos they are now saying are more effective. 
 
Good Luck!
 
Ronda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Old Lady Lucas Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2007 at 6:45am
I am a new member. This is my second diagnosis of Breast Cancer. I got through chemo and a lumpectomy in '04. Thought I was "a survivor" Then I got the news in Feb. '07 that it came back.  AngryI've had a double mastectomy. Found out in March that I have mets to the brain. Then in April a CT showed mets to the lungs, liver and kidneys. Now the bone is involved. I finished whole brain radiation and those lesions are shrinking. Newer CT shows those lesions in the other areas are shrinking also (due to Chemotherapy). Most of the time I am emotionally positive, but I fight crying binges more and more lately. Cry If there is anyone out there that has an encouraging story for me, I sure could use it.  To add to the emotional mix, I have a son who is an Army Ranger in Afghanistan. Broken%20Heart
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 2kidzmom Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2007 at 6:59am

Dear Lady,

Hug  I'm SO sorry to hear of all that you're going through.  I am very glad to see you have found this site, however.  You are in a GOOD place.  We all are here for you, so I hope that you find that encouraging.
 
You clearly have a lot on your plate, but as you pointed out, you are still a SURVIVOR!!!! Thumbs%20Up  Keep on fighting and take one day at a time!  There are many miraculous stories as well as miraculous people here on this site.  Keep on comin' in and chatting with us!  My thoughts, prayers, and HUGS are with you and your son as well!!! Hug
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2007 at 10:01am
Hi and a very warm welcome to you.
 
 
I too am very sorry to hear you have had bc come back, bless your heart and a son in the military which must worry you something awful.
 
That's positive that the lesions are shrinking from the chemo!
 
Please do keep writing, this is a great group for support and we
are always here to offer a hug,Hug
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Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote woolie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 18 2007 at 2:56pm
Dear Old Lady Lucy : Hang in there,and keep reading these posts there are a lot of caring people with good info plus you will fing alot you are not alone.God Bless All Love Woolie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: Sep 19 2007 at 7:41am
I have loved watching this website grow since I was diagnosed on 4-25-07.
 
Would like more information about Nancy's diagnosis - and why her time was so short 2 1/2 years.  Concerns me.....  thanks for any info you can share.


Edited by Karen - Sep 19 2007 at 7:45am
Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Arlene Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2007 at 10:20am
My name is Arlene.  In 2001 I had er positive breast cancer with 21 positive node involvement.  I had chemo, radiation and hormone therapy.  This year I found a lump and it proved to be triple negative.  I am more afraid this time since there seems to be less known about survival rates.  I am 63 going on 64 soon and planning my daughters wedding in Nov. 2007 at which I will wear my wig.  In 2001 I was so positive because I knew less. Now, I feel a bit at a loss.
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