Calling all TNs

lrr4993

Jenn - I am so very sorry to hear that news.  I know there is not much I can do, but if you need anything, feel free to ask.

Lisa 

jenn3

Lovelyface - I was playing with my signature line the other day and must have taken it off in error. My original dx was 6/19/09 - it not even a year since I've finished treatment.  These little cells were on the move........

Luah

Jenn, I'm so sorry, that just sucks!  Sending you warm thoughts, much strength and unfailing hope for successful treatment.  

Sugar77

Jenn - I'm so sorry to hear your news.  My thoughts are with you at this time.

Sherri 

Anonymous

Oh crap Jenn. That just sucks. It's a hard blow for sure.

Titan

Jenn..I'm not very good at words even though I talk alot..but dang..I'm so frustrated and angry right now...I'm sending you a big hug...know that we are with you with this...and hopefully the treatments you have will wipe those mets out...I know you want to get started quickly with this..probably yesterday isn't soon enough for you...it sucks that you have to go through this again so soon..

cc4npg

Jenn:  I hate hearing this news.  Really hate it.  However, as some others will also say and have said, there are all kinds of treatment to throw at it and kick its butt!  And no, it's definitely not a death sentence.  Just get your docs to move quickly and start treatment to kill off those cells.  Breathe... deep breaths.. take one second at a time if more is too much to handle.  My thoughts are with you.  Keep in mind there are many MANY women who have been down this road and are here to encourage others.. many years later.  We are not statistics.. we are individuals! 

LRM216

Jenn3:

I am so very sorry you had to hear what we all were hoping would not be said.  Please, please do not lose faith.  Words are so trite at a time such as this, and any one of us can hear the dreaded news at any time, just know that we will all be with you, every step of the way.

Linda

cmksocal

kelben - congrats on the 2 points!  I show dogs.  Did conformation a few years ago and put a CH. on a black cocker.  Now I do competitive performance events:  agility, tracking, rally & obedience.  Dog events are a great distraction from BC. 

Colleen

MBJ

(((((Jenn))))):  It's always difficult to be given such bad new, but know that we will all be here to help carry you through one day at a time.  It truly sucks but you will just have to get back in their and kick it's butt.  Big hugs!!!

sylviaexmouthuk

I just wanted to send words of encouragement from the UK to all of you newly diagnosed with TNBC and those of you going through treatment. You can all get through this, so just keep looking ahead to the end of treatment. It is now five years, eight months and three days since I was diagnosed with a very large tumour, at the age of 63. I have just had my two-yearly mammogram and all is fine. The treatment can be done and the proof is in how many of us have done it. Just take good care of yourselves, get plenty of rest, drink plenty of fluids, try to be strong and take one day at a time.

Best wishes and lots of love to everybody on this thread. I would like to say a special hello to Gillyone.

In March there is a special three day conference in London, England, at the Royal Society, on TNBC.

josephine_

Hi Jenn

Chin up,  we can beat this.  My orginal BC was also in Jume 2009, and despite the usual AC/T x 8 dd and 36 rads, like you it has metastazied to chest lung, rib bone and brain (probably Autumn 2010).  But they are being dealt with systematically.  Just finished 2nd taxol and avastin for lung CA, on Zometa (which seems to be working but would like to get denusomab), had gaama knife for brain mets, follow up 3 months.  Things going fine.  TNBC does reccur within years, and like you I think my mets were on the move from the beginiing.  My BC was 2cm with 0/11 nodes (again not unusual for TNBC)   Josephine

Anonymous

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Suze35

Oh Jenn, I am so very sorry to hear your news. There are many options out there, and I hope you find the ones that work for you. Please take care of yourself and take one moment at a time.

gillyone

hi Sylvia

jsbridges

Diagnosed with IDS in '07 at age 45. Stage I, 0/2 Nodes, lumpectomy, chemo, started radiation but stopped 1/2 way thru...found out I'm BRCA 2 Positive. Had a double mastectomy, hysterectomy, tram flap, etc. Total of 9 surgeries. Life is Good Now! However, I need hormones! Looking into Bioidentical Hormone Replacement Therapy. Any info would be greatly appreciated.

Lynn18

Jenn, I am sorry to hear your news.  I hope you can find a treatment that will take care of those lesions; I know there are many promising new medicines out there.  You are in my thoughts and prayers.

Josephine and Sylvia:  Good to hear from both of you.

JenC

Jenn - Sorry about your diagnosis.  Thoughts and prayers are with yuou and big (((HUGS))) to.  Chin up.

kelben

Jen I am sorry about your mets.   The medical field is so advanced and getting new treatments every day.  I am sending strong, healing thoughts your way.

MonikaV

Jenn warm hugs and lots of prayers sending your way. This really sucks!

mitymuffin

Jenn, there are breakthroughs in understanding this disease every day. Keep posting and letting us know how you are doing.  We all care about you.

Titan

Ok..I'm ready for a little rant here..WE have got to do something about this..I KNOW that yes.."they" are working on triple negative cancer...but isn't there something WE can do to speed this up?  Everyone is out picketing against dissolving the unions in Wisconsin and Ohio and other places..and while I feel for them..some...THIS is much more important...

What can we do?  With Jenn..and then my dear friend Just Payton having progression...and with Angelsabove..and Pauldingmom...I'm just getting tired of hearing of my dear friends having to deal with this crap.and knowing that it could happen to any one of us...

I'm sorry..but this just isn't right..too many women..it just sucks.

Lynn18

Titan:  Thank you for your rant.  I feel the same as you.  Can we organize a march in DC or something?  We need some better treatments for this disease right now.  I think part of the problem is that most people don't even know that this disease exists.  Even a lot of women who have breast cancer, don't know about triple negative.  I admit I have not told many people that I am triple negative, but I have been thinking lately about "coming out of the closet" if it would help get the word out about this disease so that we can get some attention.  Look at what Michael J. Fox has done for Parkinsons.  We need someone like that.  One of my friends' daughters is testifying before congress about Tourette's syndrome.  I wonder if anyone has ever testified about this disease. . . I noticed the government throws a lot of money at diseases like AIDS, and that's a good thing, but we really need some help also.  If anyone has any ideas, I'm in.

Sugar77

I agree....I wish there was more publicity and awareness for TNBC.  I subscribe to Preventation magazine and saw an article in this month's issue about Robin from Good Morning America. She had Triple Negative and it's mentioned in the article. 

(((((((Jenn))))) thinking of your today!

NavyMom

I am right here with you and feeling like ranting some myself. 

  I am a frequent visitor/poster on the llinois thread. We just lost one of gals and she too, was a TN.   I am mad,scared and just plain fed up with the anxiety that this disease has placed on my life.  I want a cure and I want it NOW.

Hugs to all of you

Navy

mitymuffin

And our Congress is talking about cutting NIH funding for research. That scares me.

I wish some of our British members could go to this, and report on it:

http://www.uicc.org/events/breakthrough-breast-cancer-triple-negative-breast-cancer-conference-2011

In March 2011 Breakthrough will host its first international conference on Triple Negative Breast Cancer.

This meeting will highlight novel laboratory approaches, innovative pre-clinical science and the latest clinical trial results. The aim is to discuss and advance our understanding of the aetiology, diagnosis and treatment of this challenging disease. The meeting will be a three day programme covering all aspects of triple negative disease with invited plenary speakers and proffered abstracts presented as short talks or posters. We aim to create a workshop atmosphere with ample opportunity for discussion and sharing expertise across disciplines. The meeting which will take place at the Royal Society in London from Wednesday 9 March to Friday 11 March 2011.

Titan

I'm going to sleep on this..I want to come up with something...maybe I will just start with the Cleveland Clinic..(where I go)..certainly someone there can help us...if we all start making some noise maybe we will be heard...it's just not right that we really don't have ANYTHING..except chemo.and now "they" are talking about the Parp testing going down the tubes because it is not having the expected results...

We need to be LOUD!

Anonymous

Parp's going down the tubes? How did I miss that?

cc4npg

I agree something needs to be done... attention needs to be sought... Cleveland Clinic may have some ideas.  Then you have the talk shows... and the news reporters.  It just depends on who you speak with and if you can convey the urgency to them.  Any writers in the group?  If an award winning movie were written, it'd get attention... based on a true story... and there are tons of them here.  But yes, I agree, my heart breaks every time I hear one of us has been dx with mets.. because any of us could have that news. 

minxie

jenn, I am so sorry to hear your news - many healing thoughts headed your way.

 And I completely agree that they need to find SOMETHING for us TNs. 15-20% of women diagnosed with BC have TN - that's not an insignificant amount!   It seems like the majority of time when I see sad news on the Stage 4 board, it's another TN. And that's because they have nothing to offer us past standard chemo. They need to devote more research to a targeted treatment.