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pinkilee View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pinkilee Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2007 at 7:50pm
Hello all....
Found lump on 7/17 and long story short, had bi-lateral mast. w/reconstrution on 10/3.  Chemo to follow two weeks after drains are pulled.
 
This is a great forum...Did ALOT of lurking tonight and decided to join...I hope that is okay even though I have not been diagnosed TNBC.  A friend (who is tnbc) was asking about tnbc so I did some searching and found you...and like I said before...you're a wonderful group of women.  I hope she joins.  I have learned so much in short amount of time, like minutes...literaly.  lol
 
One thing that baffles me...what does all the abbreciations mean?  Is there a list somewhere.  i.e. ned, bx etc.
 
take care,
pink
 
 
 
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Indi View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Indi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2007 at 11:24pm
StarHi, my name is Indi. I posted here when it was announced you were going to begin a foundation devoted to "triple negative breast cancer".
Lost my password, got posting at a few other sites, and between recovering from treatment and trying to stay informed, guess it kept slipping my mind to check back into the Discussion Boards here.  Still can't remember who I signed in as, but I know I did because I pledged.  Oh well.  Typical chemobrain-o-pause from A/C x 4, 12 wkly Taxol, 32 Rads, after dx IDC, Grade 3, Stellate 1.7 cm. Tumor, 2.5 cm. long, and 2.2 mm from the chest wall, chose a "lumpectomy, which was really a partial mastectomy.  4 Sentinal Nodes Removed, all negative; there was vascular invasion present. 
 
I didn't know or understand  the "triple negative" remark until I had to search for a good surgeon, and even then nothing was explained.  After going to 5 Oncologists, I finally got the picture.  I was being treated for a Stage IV Disease when I was a Stage I.  After, I was upset, because, had I known I'd have the same treatment, I would have had a bilatteral, no nodes taken, and possibly a much less aggressive chemotherapy.  It was stupid on my part, because I was being a coward instead of using my head.  It was Not for cosmetic reasons.  I couldn't care less about breasts.  Now, it's all a crapshoot. 
 
 After surgery a large hematoma in the breast (huge, actually) and a seroma the size of an apple in my armpit, forced me to wait for chemo while taking antibiotics to reduce infections in both.  I think I started chemotherapy on Valentines Day of 2006, or was it the 13th, Friday of February? I remember the hearts, flowers, and adriamycin bag as it's red fluid slopped into the vein as I shivered in fear, and was cheered by the cherubs and the candy hearts...: Be Mine, Love Always, Here We Go, you know the cute little candy hearts with sayings.  There was candy all over that Clinic.  The nurses were so wonderful, how I love them all. 
 
So, it will be one year this Halloween, 07 since I had the last radiation boost.  So far, I have only had the digital mammograms as follow-up tests, and the bloodwork is stable.  No other scans or markers.  I am in a lot of pain from the cumulative side effects, however. 
 
I've been reading and reading, and trying to figure out why I feel so ill all the time.  I have had every symptom which corresponds to Celiac Disease, a genetic illness which you may know about.  I thought it was an allergy to wheat, but actually it's a reaction one's body has to proteins in glutens and the body reacts by producing T-cells which produce an overload of antibodies, and I think, indicate some receptors are out of order.
Not unlike triple negatives; I believe, have a receptor somewhere which is "out of order". 
 
 Years ago, I lived next to a Grain Elevator, and was extremely sick, coughed and coughed; thought I had athsma.  We moved, and the asthma, IBS, Intestinal Problems, Incontinance, Acid Reflux, Fibromyalgia or whatever it was, all disappeared. 
 
I went to countless physicians when I lived there, and not one could tell me what was causing all the problems.  I thought I had Psitacosis, a disease one gets from Parrots, as we had two parrots.  Went to an Immunologist, all he said was: Oh, well at least we know your immune system works; T-cell count was way over the top.  The Allergists, saw many, finally decided I was allergic to ragweed, mold, chickens, and feathers. 
 
So, I haven't been the greatest, and this story is all ready too long.
Lived in our new house for a couple of years.  I had suffered miscarriages, and apparantly it's not uncommon in women who have Celiac Sprue Disease, along with, Fibromuscular pain, bone pain, diarrhea, constipation, joint pain, indigestion, weight loss or gain, thyroid problems, skin infections and rash (did I mention I had rashes on and off, especially during chemo?).It's called Herpetiformis Dermititis in Celiac patients, and comes and goes without warning, in blisters and rash.  You can read more, but my nephew has this disease, and my young brother has psoriasis and all the symptoms of celiac sprue, as well.  Peripheral Neuropathy is another symptom, which I have had, but was completely flattened by after Taxol.
 
So, if anyone is reading this, I am wondering...could there be a connection between Triple Negative Hormone Receptor Cancer and the Celiac Sprue Disease, which is an immune disorder?  They certainly seem to have much in common, along with this fact.
 
5 in 125 (might be 3 in 125) people in the U.S. have this disease, but only 3% have actually been diagnosed.  It's a disease that often gets misdiagnoses because it has the same "chameleon" , presents like other diseases, but not.  There are several tests, as well as blood, skin, and biopsy of the small intestine to test the little villi that process food.  Often people might suffer with wheat allergy as children, and their growth is stunted due to the fact that this disease "blocks" the nutrients from being absorbed.  Or it can lie dormant and silent and something like "chemotherapy", might wake it up.  But the test is there.
 
I am having it tomorrow.  I hate the cancer, my mother died of Inflammatory Breast Cancer at 67.  That was in the early 80's, and even though they gave her tamoxofin, I suspect she was also a triple negative.
We looked like triplets, mother, brother and I.  She also had all of the physical problems I discussed.  She just didn't complain. 
 
Well, nice to meet you all, and sorry to go on and on.  I figured, since this is the ONLY Triple Negative Only site in the world, someone might be on to the same idea.  I just plundered into it tonight, er, today... so must sort it out. 
 
I will let you know how the test goes, if you are interested.  Didn't fill out the profile here, yet.  It's likely we've met on Bc org or nosurrender, and a few others, since we trip negs are always searching for answers, it seems.
 
Have a lovely day!  Thanks for this sight.  Maybe my brain is really returning, after all!
 
((hugs))
 
Indi
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trip2 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2007 at 6:53am
Hi Indi and a very warm welcome to you!
 
I'm sorry I can't help you with your question but please do post and let us know the test results and anything else you have on your mind.  Of course we are interested.
 
Maybe someone will come along to help, I hope so.
 
 
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Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2007 at 6:58am
Good morning pinkilee and welcome to you. Smile
 
I hope you are healing well from  your mast and reconstruction.  Oh those pesky drains!
 
Earlier the Admin had said they would work on an abbreviation list but it isn't on the website yet.  Ask and we will help.  Sometimes I have to remind myself that the ladies being currently diagnosed may not know what in the world we are talking about!Embarrassed
 
NED is no evidence of disease.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2007 at 7:32am
Hi Ladies,
 
Since I am the one with free time on my hands, no "chemo brain", (just many many "senior moments"LOL), this is a site I found early on when Lori was dx, with abbreviations for cancer. I am sure that the TNBC Foundation and all of you could add many more.
 
 
If I am correct, the woman who established this site has TNBC.
 
Hugs,
Nancy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2007 at 5:33pm
Nancy, Thanks for the link. I was unfamiliar with True FAces. They had some good info. I know I will go back and check it again. Are you from Ca.?
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2007 at 5:41pm
Hi Kirby,
Your welcome. This is one of the first sites I found many months ago. No I am from Altoona, PA. Come this winter I will wish I was from CALOL I post under "daughter dx TNBC" My daughter Lori was dx with tnbc.
 
Nancy
 
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Natasha37 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natasha37 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2007 at 7:21am
Hi,

I'm a new user. Let's see, I'm 37 (35 when diagnosed) I'm 14 months out from dx (stage 1, grade 3, 3-, BRCA 1). Originally had lumpectomy (nodes negative) Went through 6 mos chemo trial at Cornell (weekly AC for 15 weeks followed by dose dense T every other week for 8 sessions), followed by oopherectomy and double mastectomy and bilateral free tram reconstruction in May. I will be starting clodrinate soon on my onc's rec, because she says there have been some trials that indicate it may be helpful at preventing mets in triple netagives. Hope it's worth (drugs cost $1000 for 3 mos supply from Canada!) Just did nipples last week and "revisions" (ouch) so am home today and remembered by PT had recommended this site.

Have a younger sister (34) who doesn't want to get tested and isn't being particularly diligent about her screening, which is frustrating.

Anyhow, not sure what more I have to add.

Natasha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2007 at 8:36am
Welcome Natasha, sorry you were in a position to be here but we welcome you with open arms.  Such a good board and a whole lot of great ladies.
 
So you were on a trial at Cornell, I want to thank you for sharing your treatment information.  Sounds like it went well and that is good news.  Also that is very interesting  about your Onc suggesting clodrinate.  We would so love to have something to take after treatments are done.
 
I was just reading another lady's post saying her Onc has suggested taking Femara after treatments.  Maybe they are starting to change their minds??
 
I so hope you are recovering quickly from your "revisions" and work on that sister of yours.  I know how women can be but she needs to get busy and be vigilant. Smile
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Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote msd1 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2007 at 11:51am
I've been looking for something for triple Negative folks for a while. I'm a year survivor as of Saturday (Oct 27).  This is the first time I've found this site.  I found my BC myself in a self-exam. I had a lumpectomy.  The margins were clear of IBC but not DCIS, so I had a mastectomy and then opted for the other side this past July.  I'm scheduled for reconstruction this month.  I never had breasts so this should be interesting Wink.
 
I am interested in long-term side effects of chemotherapy.  I had TAC for 6 rounds.  I was 33 at diagnosis.  What are the long-term side effects?
 
BCD 10-27-06
Triple Negative (1.9 cm tumor), Stage I, Grade 3
No node involvement
No BRCA gene


Edited by msd1 - Oct 29 2007 at 11:52am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote msd1 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2007 at 12:05pm
Hi Natasha,  I'm interested to know if your treatment was the result of your BRCA status or your youth.  I had TAC for 6 rounds but did not have the BRCA gene and so there were no clinical trials for me to participate in.  Can you tell me more about how you got into that clinical trial?
 
MSD1
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natasha37 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2007 at 12:13pm
Thanks! The trial I was on is still open I  think. It's a SWOG trial and basically just gives more chemo (ACT) in different configurations. There were 4 arms and you get randomized to 1. So it could have been 8 AC every 2 weeks, 8 taxol every two weeks or ac weekly, taxol every two weeks, or the other way round, or everything weekly. The Weekly AC (actually A weekly and C daily in pill form) was kinda rough, gained 20 pounds on all the steroids which so far I still can't lose (they haven't let me exercise since surgery and had me on effexor for the hot flashes, which my GP thinks prevents me from losing weight so I've just gone off that--and the hot  flashes are back!!!--not to mention menopause in general) but o/a not unbearable, and the taxol was relatively easy. The trial isn't specifically for 3- but they recommended it to me because it's more chemo and they know 3- reacts well to chemo. There is also a CLodrinate trial going right now but it opened up while I was in the hospital for my mast/tram and had to be started within 6 weeks post-chemo. By the time I called them back it was too late! So now I'm doing it out of pocket. Ugh.

Anyhow, I'm thrilled that this exists, because it makes me nuts how little attention is paid to triple negatives and BRCA cancers. If one more person says to me, oh my mother had BC, you'll be fine,I'll scream. MY mother had BC too, and she's fine (my BRCA comes from my father's side!) but this is something else altogether and there seems to be such little research connected to it!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Oct 29 2007 at 1:08pm
Hi Indi,
 
Yes, I think I have a mild form of celiac disease.  Never had the test, but all the symptoms were present for my whole adult life.  I had been doing a lot of reading about it, and tested various low-gluten diets in the year before my BC dx.  Interestingly for me, the celiac symptoms got somewhat better after my first rounds of chemo.  How weird is that?  I've never read of any connection, but it seems possible.
 
I also once read somewhere that there's a higher incidence of 3- among women who grew up in the Midwest, but I can't find where I read it.  I really wonder sometimes. 
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Indi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2007 at 1:14am
I am very tired.  Can't sleep, need sleep.  I posted a replyto you which ended up in the next topic , Feeling Miserable.
I am feeling miserable too, so must have been a "Freudian Slip".
 
Sorry. Thank you for your reply. 
 
Indi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natasha37 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2007 at 8:55am
It may have been my age and tumor pathology. IT wasn't BRCA, I don't think I even had the BRCA results when they recommended the trial to me. I think it is for hi-risk or node-positive patients, so I'm guessing my age and the triple negative status did it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Diane Quote  Post ReplyReply Direct Link To This Post Posted: Nov 03 2007 at 9:29pm
Hi I have just signed up but I have been coming to this site for the past couple of weeks.  I was diagnosed with tripple negative breast cancer in April of this year and have just completed my 4 months of chemo and now 38 radiation treatments.  I am relieved to hear that some of you are also have joint pain as I have been experiencing it as well.  Some nights I have to take Lortab 7.5 so that I can sleep.  I see my oncologist this Wed so I was going to see what he thought  of it.  I really enjoy reading and getting support from all of you, it is so good to know that we are not along in this fight.  My lymph nodes were all negative so what do you think that means for me when they talk about the statistic of only 24% living past 5 years.   I guess I am still in that "scared" state of mind.  Thanks for letting me vent.  Diane
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2007 at 5:08am

I think I am on the same schedule as you.  I have 5 more radiation tx left.

Where did you see that only 24% of triple neg.live past 5 years.  Not doubting you just wondering were that was. 
 
Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2007 at 6:02am
Hi Diane,
 
We're so glad you decided to sign up and join us. 
 
It's good to hear you have your chemo behind you, the radiation
will go faster.
 
I'm not sure about the 24% living past 5 yrs.  I've not heard that figure,  but I do want to remind you that statistics are old, we are all individuals with different bodies and pathologies and respond in our own way.
 
I hope your visit with your Onc goes well, blast away your questions to him/her so that you will feel better.
 
Sweetie we all get "scared" at times, you are welcome to vent anytime.Smile
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BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natasha37 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2007 at 10:51am
Diane,

Not sure what all your stats are, but if you were node negative than you can't be too different than me. I was node negative with a 1.9 centimeter tumor. What they told me, odds-wise (and I got the same odds from 3 different oncs) was that without chemo my chances of mets/recurrence was 20-30% over for the first 2 years. Chemo cut that in half, so 10-15%. After two years, it cuts in half again, to 5-7.5%. And if you make it 5 years, your chances cut in half again, and if you get it again, they consider it a new cancer. This is different than hormone + tumors. They grow much, much slower and come back much longer after DX. But the triple - grow fast, so if they're not back in 5 years, they're not there. I'm not sure where you heard 42% survival. Sounds like maybe that's for stage 4?

Natasha
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 05 2007 at 8:46pm
I'll be thrilled with those statistics. I had treatment before they even figured out what TN was. Node negative but a 2 cm. tumor with only half the chemo many of you are getting for smaller tumors.
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