Calling all TNs
Comments
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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
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(((((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!!!
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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.
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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
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test
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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.
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hi Sylvia
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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.
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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.
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Jenn - Sorry about your diagnosis. Thoughts and prayers are with yuou and big (((HUGS))) to. Chin up.
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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.
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Jenn warm hugs and lots of prayers sending your way. This really sucks!
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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.0
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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.
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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.
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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!
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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
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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.
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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!
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Parp's going down the tubes? How did I miss that?
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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.
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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.
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Hi All,
I just found this thread and wanted to let you know the latest on the Iniparib or Parp Inhibitor trial. I am part of the expanded access group and started taking gemacitibine, carboplatin and Iniparib two weeks ago. I have been told that the parp inhibitors were not very effective for line one people (those that have not had chemo before). It is still reported to be effective for some line two and three people and they are still allowed to have it as long as their oncologist approves it. My doctor approved it so I'll be starting my second treatment next week. Please let me know if anyone else is continuing. Positive thoughts go out to you all.
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Jen- sorry to hear this...treatment has come far, and you just need to keep your head high- it will all work out this is a UGLY diease. But new things come out all the time. We all have t ramin HOPEFUL there WILL be a CURE for this ugly disease SOON...God Bless.
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Does anyone know the answer to this, please? Does one have to be 100% negative for all 3, ER, PR, HER2 in order to be TN. If you are 5% positive for a hormone, would you then be regarded as a TN or not? My onc. just doesn't answer this question well enough for me to understand. I am 5% positive for PR, so am I a TN or not? I really would like to know.
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hi everyone. i finished up chemo 7 weeks today. i am debating on rads or double mastectomy. my surgery is set for march 8th for the double mast. and immediate reconstruction with tissue expanders. i am having the gene test done this tuesday and a week later should have results. not sure what to do. do i just do radiation or go on with the the surgery ? who knows, i may need rads after surgery and i may need mastectomy after rads. i am triple negative. i had 2 of 4 nodes positive. i did 4 rounds of cytoxin/aramyicyn then 10 of 12 taxol. i did really well during all of it but couldn't finish the last two taxol cause of the neoropathy setting in. it is about gone in the fingers but the feet are still pretty bad. not horrible but as soon as i get up to walk, it takes a few minutes to get use to it. so what i really want to know is anyone did the surgery without the gene test and what is it like to have the double mast. and immediate reconstruction with te. i am scared and can't make up my mind. i have talked to my doctor and she is great. she says wait for the gene test results and if negative, no need for mast. if positive then definetley. i l love my doctor to death, but what if i get it back in the scar after the mast.? i just don't know what to do. i have been on here for about 7 months. you can find me under "just diagnosed with IDC and scared "! i have been following and posting for a while. can someone please tell me about laurajane ? is she ok. haven't heard or seen from her. i followed her until december and then nothing. praying for all of you and any input would be great as to what i should do. scared to make the wrong decision. thanks all !!
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Jody...Laura is partying in NYC right now! She seems to be doing pretty well..
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Jlynnbain1031, is a lumpectomy plus radiation not an option for you?0
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Jenn- So so sorry to here the bad news. My thoughts are with you. (((hugs)))
So, came back yesterday from my surgery. Slept all day tuesday after the surgery but felt pretty good yesterday. It went really well and does not hurt that much. Yesterday, I only took Tylenol. I have 2 drains and will have them for the next 2 weeks. Overall it's less painful then I expected so very happy about that! I don't know yet how many nodes they took out. I should know in 2 weeks when I go see my doctor. And I should know the results of the biopsies of everything in 4 weeks. Meanwhile, very happy to be back home and reconnecting with you guys.....................
Hugs to everyone. XX
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so glad to hear laura is doing ok. i had the lumpectomy before chemo. after clear margins, i started chemo then was suppose to start rads after and decided with both my great grandmothers having bc that i just wanted the mastectomy. with the surgery right around the corner, i am started to get a little scared and not sure if i just want to do the rads or surgery. such a hard decision. i have heard that the tissue expanders are really uncomfortable and hurt. decisions decisions ! i talked with the doc and will at least wait until the genetics are back. i have to make the decision soon though. thanks for letting me vent !!
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