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meri View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote meri Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2007 at 12:08pm

Thank you to everyone who has posted to this website, and especially to those who created it!  I am so impressed with the strength of everyone.  I was diagnosed in July 2006 with triple negative bc.  I survived chemo and radiation and am now hoping that the cancer never returns.  I've been kind of surprised how emotionally drained I am.  Having this site to come to will be a BIG help.  I've got 2 grandchildren on the way...one in Jan and one in Apr.  Looking forward to spoiling them!

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Arlene View Drop Down
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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 2:23pm

just diagnosed. Had positive last time around other breast and now neg. on the other side. Will go thru chemo and rad. starting next week. Wondering if you know what drug you took for chemo.  Arlene

 

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Karen View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Karen Quote  Post ReplyReply Direct Link To This Post Posted: Sep 22 2007 at 3:54pm
Hi Arlene,
I was diagnosed in april with tnbc and have gone thru 4 treatments of ac and 4 treatments of taxol.  I start radiation of monday for 6 1/2 weeks.
 
karen
Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN
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efisher View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote efisher Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2007 at 7:01am
Hi Ladies,
 
I am a newbie.  Just diagonosed last week with triple negative.  I am 29 with a 2 year old daughter and 10 year old stepson.  I am going to get a MRI next week as well as meeting with the oncologist.  Does anyone have any advice on what to ask or what to expect in the weeks to come?  I have been searching through the internet on information and none of it is very uplifting. I am glad I found this site to help...Thanks in advance for any advice.   
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paula View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote paula Quote  Post ReplyReply Direct Link To This Post Posted: Sep 23 2007 at 3:16pm
Hi Ladies, just found this site by accident when I was surfing the net for triple negative breast cancers.

I was diagnosed in Feb/04 with lft IDC, Stage 1, Grade 3, tumor 1.75 cm, 1 out 3 nodes (microscopic). I had a lumpdectomy & auxiliary lymph note disection. Completed 2 out 6 CEF (canadian standard). Developed capiliary leakage syndrome (Has anyone heard of this). Doctors told me I can never have chemo ever again. I was also told 2 cycles is like having no chemo at all. Completed 30 radiation & 6 boosts.

I was not aware that triple negative was worse that the other breast cancers. My oncologist gave me 92% stats. Now I am very concerned about Met or reocurrence.

Been having problems with blood in stool and abdominal pain. My General surgeon ordered gastroscopy and colonoscopy (to be done 2 days from now) and an abdominal CT (next week). My cancer doctor ordered bone scan because of debilitating back pain (this week).

I decided also to have both breasts removed to lessen chances of it developing again (hopefully op will happen this year).

Is there anyone else out there that have developed this capiliary leakage syndrome, or was not able to complete chemo

Thanks in advance for any advise.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Sharon Quote  Post ReplyReply Direct Link To This Post Posted: Sep 25 2007 at 12:37pm
My name Is Sharon I'm 36 and was diagnosed 10/30/06. I'm a grade III invasive ductal carsinoma, triple negative. I've done 8 rounds of chemo ac/taxol, rt side masectomy with axillary node disection and 35 rounds of radiation. My path report after surgery showed that the cancer was gone and I was node negative. The chemo worked really good for me. (my tumor was rather large).   Right now I'm on nothing my bloodwork in April was good and I go in for scans in November. I'm very optimistic. Any good advice on changing your diet. I love red meat and I have a very high fat diet. HELP..
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lisab View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2007 at 3:49pm
I, too, accidentally found this site while surfing the Internet.  I am so glad you all are here. 
 
I'm BRCA 2+, triple negative.  Had a lumpectomy with radiation in mid-2004.  Found out my BRCA status in 2004 and chose to have a complete hysterectomy in November of 2004 and PBM with reconstruction in 2005. 
 
Just recently found out my cancer has spread to my chest wall and lymph nodes behind my pectoral muscles.  I just recently completed 33 radiation treatments with 3 chemo treatments (carboplatin) at the same time.  I'll continue to have chemo (carboplatin) and Gemzar will be added at sometime in the future. 
 
I hope I can contribute in some small way to this group and it is a pleasure to be a part of TNBC. 
 
Love and hugs,
 
Lisa B.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 09 2007 at 9:00am
I can't believe I just found this. Rather by accident. I read the article in Oprah and tried looking up info but couldn't find anything. This morning I was skimming thru People ,a page with "pink items" and saw the name and tried again.
 
I was diagnosed in Feb. of 01 at the age of 45. 2cm invasive ductal carcinoma. grade3. Ihad a lumpectomy, 4 rnds of AC, radiation and was good to go. I didn't even hear the term Triple Negative until last year when someone I knew was dx with the same and practically the same pathology as well. Except her dr.,  had given  her the more update version of difficulty, having this dx, along with her receiving 2x as much chemo as I had. I was a bit wigged by this new knowledge even though I felt I keep up all the time with what is going on with cancer updates. I have brought this up with my onc and surgeon and their attitude is "I am still here and doing fine". I guess that is true. Just hard to not flip when I read all this negativity. I thought I had come to terms with cancer until reading everything now coming out about tn.
 
Hopefully after reading all this I can find peace again...afterall...it has been 7 years and all seems fine. I did have genetic testing done, probably in 2003 and that was negative.


Edited by kirby - Oct 09 2007 at 9:04am
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Beth G View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Beth G Quote  Post ReplyReply Direct Link To This Post Posted: Oct 10 2007 at 4:09am
Hi Ladies,
 I am new to the website, and found it from an article in a magazine. I was diagnosed with Trip Neg on March 5, 2007 while I was 35 1/2 weeks pregnant with our second daughter. We also have a 3 1/2 year old. (and I had my 30th b-day along the way!)I was diagnosed at Stage 3 - spreading to the lymph nodes. I went through 6 rounds of chemo over 18 weeks, and just had a mastectomy, with full axillary removal, on Sept 21. I will begin radiation in a few weeks - after that I am having the left mastectomy - I just want to eliminate as many possibilities as I can - with reconstruction. I appreciate any words of advice....
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boppy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote boppy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2007 at 8:24am
What a great website. Thank you all for your posts. Has anyone looked into getting onto the Combined Federal Campaign in order to receive donations? Another question, does anyone know if ER neg is the same as Triple Neg? Thanks to all.
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Terry View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terry Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2007 at 9:12am
Hi everyone, new to forum.  DX in 2/07, 3 rounds of FEC, then 3 of Taxetere.  Now almost done with 30 rads.  Having a bad day today with all the negative news coming out about triple neg BC.  I know all the prognosis' and thought I had dealt with them, but today it all came flooding back, when I read triple neg was considered the "deadliest" form of BC.  I am 54, white.  Lots of joint and leg pain, which onc seems surprised about, so does nothing.  Sometimes unbearable.  So great to find gals like me on here.  Went to support group a few months ago, but no one had triple neg.  Suffering terribly from neuropathy, also.  Just thought I'd share.
Terry
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NancyJo Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2007 at 5:40pm
Tnank you for creating this website.  I had not idea untill yesterday there was this much information on the web about triple negative Breast cancer.  I was diagnosed in feb 2004 cancer was 2.4 cms, stage 2, grade 3, 2 positive lymp nodes plus extensive lymphovascular involvement.  Diagnosis and Treatment were done in New Zealand so I do not have testing done on a regular basis except mammograms.  I had AC and Taxotere plus 6 weeks of radiation following a mastectomy.
 
It is so nice to know others with the same diagnosis.
 
Cheers Nancy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2007 at 5:56pm
Pleased to have found this site as well.  I am approaching 1 year from diagnosis - grade 3, node negative, triple negative.  I will have genetic results 10/22/07 and will then determine if bi lat mastectomy will be in order as well as ooph.  I was leaning toward bi lateral at first diagnosis and then decided that a lumpectomy would be better for me - was somewhat encouraged by opinion #1 that I could always do a double if I felt so inclined at a later date - sound advice but I wish this was all behind me.
 
I've worked throughout treatment and am now just plain tired and ready for a break and some disability time.
 
Does anyone have any suggestions?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dixiegal Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2007 at 12:09pm
Hello to everyone -- I am new today to this site having just Googled "triple negative breast cancer" to find out more about this type of cancer. I am 55 yr old  caucasian woman diagnosed on 3/8/07 with invasive ductal cancer in left breast.  2 cm, stage 2.  Had lumpectomy surgery on 4/10/07 at which time sentinal node biopsy showed no cancer in any lymph nodes or elsewhere except in the breast tumor.  Finished 4 sessions of A/C and 4 sessions of Taxol treatments this summer, and now have finished 8 of 30 radiation treatments scheduled thru November 07.   Oncologists sez I am in the 95% percentile of "no recurrence" survival but I, too, was reading the O magazine article in the hospital waiting room and started getting nervous about my optimistic prognosis.  The word "lethal" really bothered me.  Have met other triple negative women in hospital support groups here in Minneapolis...we all wonder about our chances of recurrence... Found your website and intend to come back often..suddenly I don't feel so alone with this.  Have no children.  My husband resigned his job in AZ to come back to MN for my surgery and treatment...hasn't been able to find work since he returned.  He is a butler/personal chef/houseman.  I have kept working thruout my treatment (except for chemo day on Thursdays) and this has still been a real shock to our household...and stressful.  Luckily I have wonderful health insurance.  Thanks for being here!  Dixie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liliana Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2007 at 4:13pm
Hi Dixiegal
 
Please tell me what Taxol was like and how did it compare to AC?
And don't worry about the "lethal" word...what you have to do now as I will is add more exercise and make improvements on my diet with natural supplements--presently researching on that, too!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liliana Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2007 at 4:16pm
Hi Dixiegal
 
Please share with me of what was Taxol like in comparison to AC.  I'm on the AC for the 3rd time this week.
And don't worry about the lethal word so much...like me, I suggest we improve our diets, include more natural supplements and add exercise!
Blessings,
Liliana
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 18 2007 at 9:02am
Boy I see we have alot of new members!  Welcome to all of you.
 
Please jump into our discussions with whatever is on your mind or start your own topic and don't forget to vote in our polls.
 
 
Stage 2 2003
Stage 1 2007
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Flasparr Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2007 at 7:24pm
I'm new to this whole thing...never thought I would be at risk for breast cancer; went from mammo 9/11/07 to surgery 10/2/07; echo tomorrow to see if heart can tolerate Adriamycin; Radiation doc consult 10/29; Infusaport implant 10/30; 3rd oncologist vist 11/5 to set up chemo based on radiation doc eval.  Fighting pain in L arm basilic vein; numbness and burning feeling back of L upper arm; feels like a sticky yuk ball is caught in my armpit; doing range of motion to arm to prevent cording; fatigue after about 6 hr. activity so not yet back to work; Exploring Gary Null and alternative holistic treatments; started at dx 9/13 after biopsy to make fast lifestyle changes in recognition of my wake-up call here; have radically changed diet to primarily raw/vegan "alkalyzing"; threw out ALL cosmetics, foods, etc. with ANY funky chemicals (do a net search for carcinogens in cosmetics!!) Taking beta glucan, AHCC, Flax seed oil in cottage cheese (Budwig plan), probiotics, multivits, reishi mushroom complex, CoQ10 and metal free fish oil omega 3.  Drinking 1/2 gallon water a day.  Cold turkey quit smoking.  Actually, my skin in a month has smoothed, and is less wrinkled, not as dry, and more luminescent; my dark eye circles are fading...so the diet and supplements are doing something.  Trying to really boost my immune system and detoxify my food, skin and environment.  Have noticed with the diet, that underarm odor is non existent, even if I sweat...no deodorant needed.  Wow!  Doc is talking TAC...AC first X4, then T X4.  Had MRI breast, brain, thoracic and lumbar spine, and whole body CT/PET scan...painful spots in back  (that started this whole thing at the chiropractor office) is thought to be DJD and disc stuff, so seeing pain doc next week to manage for comfort while we deal with the CA.  My whole life fell apart in less than a month!  Per all the labs and tests so far, I'm healthy as a workhorse, it's just my breast that had cancer.  In reality, I'm shaking in my boots, trying to learn everything I can, and make rational, thoughtful, sound decisions.  So far so good, but I'm just getting started on this road.  I fear the worst may be yet to come.  As my grandmother always said, "God will never give you a burden greater than that you can bare."  With prayer in my heart, and the cocoon of love from my husband, children, family and friends around me, I trust that HE is preparing me for the work ahead of me in the next years of my life.  This experience is my boot camp.  I need to learn to live life as HE has prescribed with the gifts HE has given; HE will provide it all as I need it if I keep his faith.  So, here I go with the rest of you as we gather soldiers in the march.   
DX X3- 9/13/07;lumpectomy, 1+/9nodes;5cm encapusulated;Stg IIB;port out 6/08 post chem;TAC11/07-2/08;radBIDX6wk 4/08-6/08;Cauc;HOSPICE RN; BRCA1+;prophyl hyst/ooph 7/8/08;L1Mets;STG IV 8/1/08
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Liliana View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Liliana Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2007 at 9:16am

Dear Flasparr

I hear ya!!  I understood every syllable you stated inlcuding the spirituality part.  And your grandmother is right...there's nothing HE will hand us that we cannot bare...although this road is not easy--you are not alone--this website is yours and ours. 

I really think you are on the right track with healthy food and supplements--this is where I personally need help on.  I don't or can't find a naturopath here in Houston or someone that can tell me what to take and what amount...would love to have no underarm odors!!  If you can start new post with this topic--I think it would help a lot of us.  We can start on these supplements and literally run away from cancer....I walk on my "good" days with my lab!  I really believe we can make a difference with what we put in our guts and environment we choose to live. 

Blessings, Liliana

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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2007 at 7:39am
Hi Flasparr and a warm welcome to you.  Sorry to hear you have reason to join but this is a great group of ladies and we are all here for each other and to learn.  Please join in with us and best of luck with everything you have coming up in the near future.
Stage 2 2003
Stage 1 2007
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