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TNBC Foundation video--We need your help!

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    Posted: Dec 07 2007 at 6:58pm
Hello everyone,

The TNBC Foundation is in the process of producing a video for use in presentations to the media and potential donors. We would also like to feature it to some extent on this website. Our goal is to create an informative video that will give a voice to our cause and give a face to Triple Negative Breast Cancer.

To that end, we are asking for your help. We would like to feature quotes and/or testimonials (in written form or video footage) from our website users. Tell us what the TNBC Foundation has meant to you. Why are we essential in the fight against breast cancer? Why should people support us rather than other breast cancer charities?

We are also looking for photos and/or video footage of women suffering from this disease and their loved ones. The idea is to give a face to the disease to illustrate its impact on the lives of both the patients and their families.

For quotes and testimonials you can simply post to this topic. If you are interested in sending pictures or making a short video please contact sharon@tnbcfoundation.org for more information.

We appreciate all of your help and are confident this video will help us spread awareness as well as serve as an aid in fundraising. Thank you in advance.
 
Sharon Fredman
Director of Media & Technology
Triple Negative Breast Cancer Foundation


Edited by Admin - Dec 21 2007 at 11:03am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Skippy123 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 08 2007 at 5:02pm
I'm happy to contribute somehow.  Let me know how you would like this done.
Skippy in Austin

Dx July 2007
IDC, Stage II?
Triple Neg
BRCA 1/2 Neg
A/C August - October 2007
Taxol October - December 2007
Lumpectomy Jan/Feb - 2008
node negative
Finished rads April 2008
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Post Options Post Options   Thanks (0) Thanks(0)   Quote brookiecheryl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2007 at 7:48pm

Dear Sharon,  

 Not sure how I may be of service, however, am willing.  After seeing my oncologist today as an eight year survivor, I "just" found out(learned) the term "Triple Negative."  At time of diagnosis I was told rapid growing, virulent, aggressive.  Today I was also told usually it returns in 2 years.  No wonder, after chemo, I was told to go live my life.  Do what I always wanted to do. Oops, little bit of a  problem, With chemo gummy brain and teens at home, how was I to sort  out "living"  enough to do what I've always wanted to, considering
I had to return to work teaching to maintain insurance. Theoretically, I am just now beginning to grasp the "live" message.  Therapy, other survivors of various cancers and plan old fatique are forcing me to take note, get the drift, and start living!                                                 
It bothers me they did not truly reinforce the severity of my situation.  Today Dr. said if itdoesn't come back in 2 years, it almost always in 5.  Now Im 8 out and back on pins and needles...which never really left but are now forcing me to take action!  Finish quilts, visit an elderly aunt in Arizona, illustrate a book I wrote my 12 grandshildren, turn down a PHd program.  TIME  is now to be spent caring for my self for example enough sleep and only being where and with whom I chose. Cripe!  I go to a big clinic and when I went I thought staff was coming out of the woodwork to say "hello" because they like me  Heck!  They were stopping by to see the 8 year freak laughing and living!  I thank GOD for my freakiness.  But now I must go on a deeper understanding quest for the generations that follow.
Will talk to my family about the video aspect.
God Bless You!
 
Brookiecheryl  age 55
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Post Options Post Options   Thanks (0) Thanks(0)   Quote brookiecheryl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2007 at 7:48pm

Dear Sharon,  

 Not sure how I may be of service, however, am willing.  After seeing my oncologist today as an eight year survivor, I "just" found out(learned) the term "Triple Negative."  At time of diagnosis I was told rapid growing, virulent, aggressive.  Today I was also told usually it returns in 2 years.  No wonder, after chemo, I was told to go live my life.  Do what I always wanted to do. Oops, little bit of a  problem, With chemo gummy brain and teens at home, how was I to sort  out "living"  enough to do what I've always wanted to, considering
I had to return to work teaching to maintain insurance. Theoretically, I am just now beginning to grasp the "live" message.  Therapy, other survivors of various cancers and plan old fatique are forcing me to take note, get the drift, and start living!                                                 
It bothers me they did not truly reinforce the severity of my situation.  Today Dr. said if itdoesn't come back in 2 years, it almost always in 5.  Now Im 8 out and back on pins and needles...which never really left but are now forcing me to take action!  Finish quilts, visit an elderly aunt in Arizona, illustrate a book I wrote my 12 grandshildren, turn down a PHd program.  TIME  is now to be spent caring for my self for example enough sleep and only being where and with whom I chose. Cripe!  I go to a big clinic and when I went I thought staff was coming out of the woodwork to say "hello" because they like me  Heck!  They were stopping by to see the 8 year freak laughing and living!  I thank GOD for my freakiness.  But now I must go on a deeper understanding quest for the generations that follow.
Will talk to my family about the video aspect.
God Bless You!
 
Brookiecheryl  age 55
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sftfemme Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2007 at 8:46pm
That is so great that you are 8 years out.  What is not so great is that your doctor tells you that it almost always comes back with in 5 years.  Wow, he really is a supportive kind of guy!  I'm so sick of hearing a million different stories on reoccurance, I wish I knew what was real and what isn't.  I don't know what your original diagnosis was but I choose to believe that I will beat this monster and I really need to have a doctor that believes that too.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2007 at 5:45am
Brookiecheryl, welcome and that is wonderful you are 8 years out!
 
Everyone is an individual and I don't see how they can know for sure that
bc will come back, it doesn't for everyone.  Most of what I have read about recurrence says that after 5 years our risk drops.  It is all very confusing.
 
You've proven your Doc wrong so far!  It didn't come back in 2 or 5 yrs and you are still doing great, it may not come back at all.
 
 
Stage 2 2003
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BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 28 2007 at 8:24am
Brookiecheryl,
 
Once again, I'm restating Pam LOL  I'm always "Me, too".
 
My understanding - and it makes sense to me - is that if the TN cancer hasn't matastisized in 5-8 years, the probability is almost zero that it will ever be a problem.
 
I suspect your doctor wasn't communicating well.  I have 3 yrs to go before my 5 yr NED mark.  When I reach that I'm planning on scratching this cancer off my worry list ! Clap
 
Jessie
 
 


Edited by Jessie - Dec 31 2007 at 9:26am
IDC,Stage I,Grade 3,dx 4/06
dbl mast 5/06,
systemic MRSA post surgery
septic shock, heart attack
triple bypass 1/07
no chemo due to infections and heart issues
so far NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote peach Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2007 at 5:35am
Brookiecheryl,
 
Wow that's great news 8 years NED.  My understanding is that a few years ago there wasn't even a name for TNBC.  Maybe it wasn't such a bad thing not knowing, sometimes I think I know to much, I just finished treatment and feel like I should get my life in order and wait for the other shoe to drop.  Thanks for posting it's always encouraging to hear from a survivor.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote theshalhoubs Quote  Post ReplyReply Direct Link To This Post Posted: Jan 01 2008 at 10:55pm

I am a 37 y/o, caucasian female who grew up in New Orleans, and I have lived in Southern California now for the last 20 years.  I was dx with Triple  Negative Breast Cancer as of June 26, 2007 after I had a sharp pain in my chest while working in the County ER.  I have been documenting my experiences through a blog on myspace.com & emails since July '07.  I love sharing my journey; it is very therapeutic for me.  I have been doing my best to raise awareness of what a person goes through when they have been dx with cancer.  I won't let my coworkers forget me, and I keep in constant communication over the internet.  I believe it helps others to understand the real Cancer story...the details that most won't share from a nurse's perspective.  The more I shared, the more they wanted to know.  My family, friends and colleagues now actually look forward to the next Blog.  I too had no idea at first what Triple Negative implicated...NEGATIVE sounded good to me...after all I'm an ER RN...and in the ER if something is negative...you send the patient home in good health.   This time Negative was really bad!  I work with many physicians and nurses, and they had no idea either until I started teaching them about what I've found regarding my dx.  I am determined to make it through this with the support of my Oncologists, family & friends, and prayer!  I have two small children and an amazing husband, and we have big plans for our future.   And anything that I could do to help myself and others through awareness to get better treatment plans...I am ready to do it.  I am here for us all!



Edited by theshalhoubs - Jan 01 2008 at 11:02pm
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HI, I am new. DX in Jan 07, just getting ready for THE BIG CHECK UP this Jan. 08.  Went through chemo and and rads. Then nothing.  I keep reading about tnbc and I am starting to get worried.  Well I have always been worried but now, the more I learn the more I worry.   It makes me wonder, how do I get all the facts when so many Dr. and People don't know about TNBC. I still don't have all the facts and my bigest problem is that I do not know what questions to ask! 
 
They said I was lucky, caught early no nodes involved.  But stage 3? based on size I guess, it grew fast.  I found lump in Dec. and had surgery in Jan 07.  I do not have it like other women, as bad as some. When reading others story, I almost feel gulty, for not having it worse.  
 
 I would be glad to help with my story, I had the genetic test done also, which was also neg. for my type of genes.  My mother had BC 20 years ago, and still living, at that time they didn't run all the test as they do today.
 
Please let me know what you need or what information needed.
 
Thanks Linda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote linda107 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 05 2008 at 1:38pm
HI, I am new. DX in Jan 07, just getting ready for THE BIG CHECK UP this Jan. 08.  Went through chemo and and rads. Then nothing.  I keep reading about tnbc and I am starting to get worried.  Well I have always been worried but now, the more I learn the more I worry.   It makes me wonder, how do I get all the facts when so many Dr. and People don't know about TNBC. I still don't have all the facts and my bigest problem is that I do not know what questions to ask! 
 
They said I was lucky, caught early no nodes involved.  But stage 3? based on size I guess, it grew fast.  I found lump in Dec. and had surgery in Jan 07.  I do not have it like other women, as bad as some. When reading others story, I almost feel gulty, for not having it worse.  
 
 I would be glad to help with my story, I had the genetic test done also, which was also neg. for my type of genes.  My mother had BC 20 years ago, and still living, at that time they didn't run all the test as they do today.
 
Please let me know what you need or what information needed.
 
Thanks Linda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Stacy Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2008 at 5:25am
Did you have radiation?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote linda107 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2008 at 11:35am
Yes I had radiation, 6 1/2 weeks
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