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Welcome From TNBC Foundation

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Category: TNBC Forums
Forum Name: TNBC Talk
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Printed Date: Nov 30 2021 at 12:48am
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Topic: Welcome From TNBC Foundation
Posted By: hayleyd
Subject: Welcome From TNBC Foundation
Date Posted: Jun 13 2007 at 12:45pm
Hi everyone! Welcome to the TNBC Foundation’s website. We are thrilled that so many women from around the globe are visiting our site and sharing their stories. We wanted to introduce ourselves and tell you a little about who we are and what we hope to accomplish. We are a group of young women who founded this organization in response to our close friend’s diagnosis with triple negative breast cancer. Our friend’s name is Nancy. She is 37 years old and has a 5 year old daughter. She has been battling this cancer for over two years. After Nancy’s diagnosis we desperately searched for information and answers about this type of breast cancer, but so little was available. Research in this area is minimal and most people are completely unaware of the existence of triple negative breast cancer. We founded this organization to increase awareness and to raise money for research targeted specifically toward triple negative breast cancer. We were then able to successfully recruit some of the top medical minds in the field to advise us and to guide us (one of our Advisory Board Members, Dr. Eric Winer, was recently named Chief Scientific Advisor to the Komen Foundation). We started this website hoping to reach out to women suffering from triple negative breast cancer and to the public at large to ignite interest in our cause. We added “TNBC Talks” to provide a forum for women diagnosed with triple negative breast cancer and their loved ones to connect and share information. We are very proud of what the foundation has been able to accomplish in such a short time. We recently hosted our inaugural fundraiser entitled, “Peace, Love & A Cure” in Nancy’s honor, which was an enormous success – raising more money than we ever thought possible – OVER $200,000! We will be posting more details about the event on the website shortly. We are hopeful that this is only the first of many successful fundraising efforts and we look forward to involving more members of the TNBC community in future events. As a relatively new organization, our website is continually undergoing revisions. We are working to make it even more informative and, we hope, more helpful to our visitors. To that end, we are looking to add a Spotlight Stories section, which will highlight the experiences of certain visitors to our website. We have received emails from many women diagnosed with triple negative breast cancer who are living full and happy lives. We hope their stories can offer strength and hope to others living with this disease. If you would like to share your story, please let us know.    We look forward to hearing from you. Please let us know if you would like to get involved. Peace, Love & A Cure, Hayley, Allison, Andrea, Sharon & Claudia

Posted By: DEEAUS16
Date Posted: Jun 14 2007 at 10:37am

Posted By: 2kidzmom
Date Posted: Jun 20 2007 at 9:44am
Smile  Thank you Hayley for having the foresight to start this Site.  I did not realize at my time of diagnosis how strongly the triple negatives are differentiated from other breast cancers and how few of us there are.  I never even heard the word "triple negative" until I was almost done with my chemo. 
There really does need to be much more research done in this area.  Maybe then we can find something that impacts us as much as Herceptin has impacted the HER-2+ women. 
Thanks again!

Posted By: christie
Date Posted: Jul 15 2007 at 4:56pm
Big%20smileThanks so much girls for this website.  I have been searching for something like this for 2 years!  When I was diagnosed a little over 2 years ago there was very little information about triple negative disease.  It is so nice to hear from people that are triple negative and are doing well.  Everything you read about our subtype of breast cancer is always so negative.  I appreciate all your doing to try and raise awareness about triple negative disease.  We need more research and it's foundations like this one that will get us to the forefront!TongueSmile

Posted By: BeeCee
Date Posted: Aug 26 2007 at 6:55pm
Hi Hayley,
I want to tell you that I appreciate this forum so much! I was given the link to it by a member of another forum. This is exactly what I have been needing as it is so hard to find info on triple neg BC. I belong to other boards, but they do not focus on triple negs. I didn't even understand what this was until I was well into my chemo. My onc never talked about the significance of it. I will be checking in often to read & post.
Bonnie Thumbs%20Up

Posted By: Marie
Date Posted: Aug 30 2007 at 11:03am
This is a wonderful website. I was diagnosed with Triple Negative Breast Cancer, with the news given to me in a very flippant way by my surgeon. He did not even tell me that I was Triple Negative, but simply said that I had a very 'active' cancer. It was only while I was in hospital that I read my notes and discovered for myself. (I am a RN). I had worked in an oncology ward for some time during my nursing days and have witnessed the effects of chemotherapy, so I am not at all looking forward to starting it in September 26 '07.
It is for this reason that I am looking for anyone who has gone down the alternative route, as I am seriously considering this way, especially due to the fact that my surgeon informed me that the benefits of chemotherapy are only 5% and if it returns 'there is nothing to be done'.
I have Stage 1, Grade 3 (TNR). I had a lumpectomy, lympth node removal (all clear), followed by mastectomy.
Thank you all again for this wonderful site and I will always remember Nancy in my prayers.
Marie   Smile


Posted By: BeeCee
Date Posted: Aug 30 2007 at 7:57pm
Hi Marie, I am a newbie as well. I agree that this is a wonderful website.
My dx is the same as yours (see my signature below) This is what my onc told me before we set up my treatment plan: the cure rate would be 70-75% with surgery+rads and it would be 82% with surgery+chemo+rads. I didn't hesitate at all........I told him to do everything he could to get me over this.
I am surprised to hear that your surgeon told you that if cancer returns, "there is nothing to be done". My understanding is that you do all you can to keep it from returning (surgery, chemo, rads) but if it does, I think there is most definitely a lot that can be done. I have met ladies on other boards (triple negs) that have mets and have been stable for years.
While it would be nice if we had some magic pill (like tamoxifen) to take, that is not the case for us. I have read, though, that chemo is much more effective on ER/PR neg than ER/PR pos, so we have a better chance of nipping it in the bud without having to take meds for 5 or more years.  
Good luck with whatever route you decide to take. Treat your cancer the same way it has treated you. Kick some butt!

Bonnie, age 63, Dx on 8/7/06 IDC stage 1 grade 3, triple neg, lumpectomy x2 of L breast, 8 nodes neg, 4 x AC & 4 x Taxotere, bone scan 2/07 (neg), 33 rads, Tx finished 5/7/07, Mammo 8/9/07 (normal)

Posted By: glenine
Date Posted: Sep 02 2007 at 1:55am
Hi All,
      Newbie to this terrific site.But an oldie but Goodie to triple neg BC!
Stage 4 right out of the BC shoot.Met to lung along with a 2.3 cm Gr3 tumor..

Negative nodes ,Now you all must looked a little puzzled....HUH??
My breast cancer is very rare,Its called,Metaplastic Carcinoma and usually like to travel through the bloodstream.(Why Nodes were Neg).....Vats Proceedure was done on the lung met and I recieved high dose Adria,follwed my a double mast,(One was prophlactic).then followed by Taxatere. Guess what..It worked.I have been NED since 2001...Looking forward to posting often.
Love and prayers.

Posted By: trip2
Date Posted: Sep 02 2007 at 11:20am

Hi glenine and a very warm welcome to you  Many congratulations to being NED since 2001Clap

Please have a look around and don't forget to vote in our polls.  It's always so good to hear good news and that the meds are working! 
The positive news is wonderful and I'm very happy for you, whoohoo.
We look forward to hearing from you again,

Stage 2 2003
Stage 1 2007

Posted By: BeeCee
Date Posted: Sep 02 2007 at 4:00pm
Hi and welcome, glenine.
I'm a newbie as well. What an uplifting post from you, you made my day! Clap Please come back and visit often. Isn't this a wonderful forum? So many knowledgable, caring ladies here. It was recommended to me on another board. Now, I come here daily.
Hugs to youHug

Bonnie, age 63, Dx on 8/7/06 IDC stage 1 grade 3, triple neg, lumpectomy x2 of L breast, 8 nodes neg, 4 x AC & 4 x Taxotere, bone scan 2/07 (neg), 33 rads, Tx finished 5/7/07, Mammo 8/9/07 (normal)

Posted By: glenine
Date Posted: Sep 03 2007 at 9:53am
Thanks Bee Cee.....

I am checking in every day too!!

Posted By: shirleyb
Date Posted: Sep 04 2007 at 8:57am
Confused I recently was diagnosed with triple negative breast cancer and while I was looking for information - I came upon this site and it is a welcome relief to be able to share my feelings.  This is my second diagnosis of breast cancer - the first in 03 with 6 rounds of TAC, mastectomy and thirty days radiation.  It was an estrogen positive cancer.  I was hoping to reach my 5 year clean day and this cancer showed up on an MRI 7/05 and a lumpectomy was performed 4/07.  Since the tumor was small, they felt it was not anything to be concerned about.  I had four out of 15 positive nodes.  I am on my 7th week of Xeloda and will start radiation in two weeks with chemo after of platinum and gemzar for 6 rounds of 2 doses.
I am really nervous and scared about this cancer coming back.  Does anyone have any feedback on this treatment ?  Thanks.  Shirley

Posted By: trip2
Date Posted: Sep 08 2007 at 9:34am
Ohhh hi Shirleyb and a warm welcome to you. 
I'm so sorry about your second diagnosis, that really stinks.  I almost made it to my 5 year too, was diagnosed 4 1/2 yrs later.
Shirley I am not familiar at all w/the meds that you are and will be taking but have seen some articles on them and they sound like they have alot of promise.
I hope someone will jump in with some good information for you.
I know you're nervous and scared about the c coming back, me too but we've got to fight back and kick it this time.Hug
You can share your feelings here anytime, this is a good bunch of people.

Stage 2 2003
Stage 1 2007

Posted By: Ronda
Date Posted: Sep 08 2007 at 11:31am
Hi Shirley,  You may want to post your question under discussion forum, you'll probably get more feedback.  Also if you search this site with the name of your chemos you can find past posts that includes those names. 
I did AC+T dose dense, but  I know there are other chemos they are now saying are more effective. 
Good Luck!

Posted By: Old Lady Lucas
Date Posted: Sep 10 2007 at 6:45am
I am a new member. This is my second diagnosis of Breast Cancer. I got through chemo and a lumpectomy in '04. Thought I was "a survivor" Then I got the news in Feb. '07 that it came back.  AngryI've had a double mastectomy. Found out in March that I have mets to the brain. Then in April a CT showed mets to the lungs, liver and kidneys. Now the bone is involved. I finished whole brain radiation and those lesions are shrinking. Newer CT shows those lesions in the other areas are shrinking also (due to Chemotherapy). Most of the time I am emotionally positive, but I fight crying binges more and more lately. Cry If there is anyone out there that has an encouraging story for me, I sure could use it.  To add to the emotional mix, I have a son who is an Army Ranger in Afghanistan. Broken%20Heart

Posted By: 2kidzmom
Date Posted: Sep 10 2007 at 6:59am

Dear Lady,

Hug  I'm SO sorry to hear of all that you're going through.  I am very glad to see you have found this site, however.  You are in a GOOD place.  We all are here for you, so I hope that you find that encouraging.
You clearly have a lot on your plate, but as you pointed out, you are still a SURVIVOR!!!! Thumbs%20Up  Keep on fighting and take one day at a time!  There are many miraculous stories as well as miraculous people here on this site.  Keep on comin' in and chatting with us!  My thoughts, prayers, and HUGS are with you and your son as well!!! Hug

Posted By: trip2
Date Posted: Sep 10 2007 at 10:01am
Hi and a very warm welcome to you.
I too am very sorry to hear you have had bc come back, bless your heart and a son in the military which must worry you something awful.
That's positive that the lesions are shrinking from the chemo!
Please do keep writing, this is a great group for support and we
are always here to offer a hug,Hug

Stage 2 2003
Stage 1 2007

Posted By: woolie
Date Posted: Sep 18 2007 at 2:56pm
Dear Old Lady Lucy : Hang in there,and keep reading these posts there are a lot of caring people with good info plus you will fing alot you are not alone.God Bless All Love Woolie

Posted By: Karen
Date Posted: Sep 19 2007 at 7:41am
I have loved watching this website grow since I was diagnosed on 4-25-07.
Would like more information about Nancy's diagnosis - and why her time was so short 2 1/2 years.  Concerns me.....  thanks for any info you can share.

Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN

Posted By: Arlene
Date Posted: Sep 22 2007 at 10:20am
My name is Arlene.  In 2001 I had er positive breast cancer with 21 positive node involvement.  I had chemo, radiation and hormone therapy.  This year I found a lump and it proved to be triple negative.  I am more afraid this time since there seems to be less known about survival rates.  I am 63 going on 64 soon and planning my daughters wedding in Nov. 2007 at which I will wear my wig.  In 2001 I was so positive because I knew less. Now, I feel a bit at a loss.

Posted By: meri
Date 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 in Jan and one in Apr.  Looking forward to spoiling them!

Posted By: Arlene
Date 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


Posted By: Karen
Date 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.

Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN

Posted By: efisher
Date 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.   

Posted By: paula
Date 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.

Posted By: Sharon
Date 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..

Posted By: lisab
Date 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.

Posted By: kirby
Date 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 has been 7 years and all seems fine. I did have genetic testing done, probably in 2003 and that was negative.

Posted By: Beth G
Date 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....

Posted By: boppy
Date 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.

Posted By: Terry
Date 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.

Posted By: NancyJo
Date 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

Posted By: shellieh51
Date 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?

Posted By: dixiegal
Date 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

Posted By: Liliana
Date 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!

Posted By: Liliana
Date 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 me, I suggest we improve our diets, include more natural supplements and add exercise!

Posted By: trip2
Date 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

Posted By: Flasparr
Date 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 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 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

Posted By: Liliana
Date 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

Posted By: trip2
Date 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

Posted By: pinkilee
Date 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'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,

Posted By: Indi
Date 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!

Posted By: trip2
Date 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.

Stage 2 2003
Stage 1 2007

Posted By: trip2
Date 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.

Stage 2 2003
Stage 1 2007

Posted By: Nancy
Date 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.

Posted By: kirby
Date 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.?

Posted By: Nancy
Date 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.

Posted By: Natasha37
Date Posted: Oct 29 2007 at 7:21am

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.


Posted By: trip2
Date 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

Stage 2 2003
Stage 1 2007

Posted By: msd1
Date 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

Posted By: msd1
Date 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?

Posted By: Natasha37
Date 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!

Posted By: EWKSeattle
Date 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.

Posted By: Indi
Date 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. 

Posted By: Natasha37
Date 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.

Posted By: Diane
Date 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

Posted By: Karen
Date 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 past 5 years.  Not doubting you just wondering were that was. 

Diag 4/07 2.8cm, invasive DCIS, gradeIII,-LN

Posted By: trip2
Date 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

Stage 2 2003
Stage 1 2007

Posted By: Natasha37
Date Posted: Nov 05 2007 at 10:51am

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?


Posted By: kirby
Date 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.

Posted By: JoyM
Date Posted: Nov 07 2007 at 5:42am
Wink  Ok, all - I came to this site because I saw the link on another site... I am a 7yr survivor.  I was only 25, newly married, and just out of my first trimester of pregnancy. 

I am a triple-neg, and BRCA 1 & 2 negative.  At the time, back in 2000, my treatment was lumpectomy, then 6 cocktails of Adriamycin/Cytoxan - and then to follow with radiation.   I was invasive infiltrating ductal carcinoma w/medullary characteristics, stage 2A, tumor 1.5cm +1 lymph node involved. 

To me, there is tons of info out there - granted, like all have said not many of "us" out there, cuz there's more of the "other normal" breast cancers.  BUT, if you have doubts about your treatment - get more & more opinions!  I saw 5 dr's before settling with mine!  the first 2 recommended aborting my baby, and having mastectomy, & putting me in a clinical trial!

The 3rd, said he thought that was quite harsh - but he was willing to look into getting further information. 

And the oncologist & surgeon I chose, they had a whole flood of information!  They were from a NCI-designated hospital, and they were wonderful!  I haven't had any recurrence, no worries, and yes, I've made all my appointments!

My daughter is in 1st grade this year, and she is healthy & in the accelerated program!  My point is, cancer doesn't have to be a death sentence - get a specialist, get lots of opinions, and go to a Dr you can talk to - instead of being talked at...!

Posted By: trip2
Date Posted: Nov 07 2007 at 6:24am
Hi Joy and welcome to you, so glad you decided to join up with us.Smile
It's so good to hear you are doing well and 7 yrs, wow, that is wonderful, congratulations. 
Good for you for being persistent with finding a Onc you were comfortable with and obviously things went well.
That is such good advice, thanks for sharing

Stage 2 2003
Stage 1 2007

Posted By: Arlene
Date Posted: Nov 07 2007 at 1:09pm
So glad to hear about someone who has survived so long without occurance. You are also young!!!
I had the other kind 6 years ago and found out this year I was tn. My doctor is and surgeon are tops in the DC area but still I felt as if I was a part of such a small community.  I am half way thru my treatment (chemo) and will undergo radiation soon.  Hard to do twice but gee I want to live.

Posted By: sofia
Date Posted: Nov 07 2007 at 3:31pm
hi marie, i am new to this site. i am hormone neg too. i decided to forgo chemo, i had seven weeks of radiation.  i had radiation in 2005. all is going well.  but i would be happy if they would offer some kind of meds that we could take once we are done with treatment. did you go trough chemo? it sounded like you did not.  how are things going for you? hope to hear from you,  take care,  sofiaSmile

Posted By: trip2
Date Posted: Nov 12 2007 at 4:32am
Hi Sofia, it's so nice to have you join us. Smile
That's wonderful you are two years out and doing well, thanks for sharing,

Stage 2 2003
Stage 1 2007

Posted By: shellieh51
Date Posted: Nov 12 2007 at 1:35pm
Welcome and thanks for the great success story.  My daughters are 24 and 26 so close to your dx age - your are an inspiration.
Take care.

dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -

Posted By: Mary B
Date Posted: Nov 18 2007 at 6:02pm
Hello -
I just found this site googling triple negative breast cancer late on a Sunday night.  I'm glad there's a group lobbying for more research in this.  I was diagnosed with Ductile Carcinoma In Situ and infiltrating Ductile Carcinoma, triple negative, clear lymph nodes in 2001.  The infiltrating part was a lot of little bits, that when conceptually put together would have made a fairly small tumor.   I had breast conserving surgery and radiation, but no chemo (due to small size)  One oncologist thought that the gains from chemo wouldn't offset the possible side effect, another thought that the cancer would come back distantly and aggressively.  I listened to the first.   I'm 5.5 years out of treatment and so far so good.
Early on I was in a support group with ER, PR positive women, all doing tamoxifen or ...other adjuvant therapies after chemo.  They were having side effects, and would discuss and complain about them and I'd just sit and think - well, there's nothing I can take to help this.    I went to the National Breast Cancer Coalition conference the first year after my treatment and asked about triple negative research and there wasn't much going on.  I'd ask my oncologist after big breast cancer conferences (San Antonio) if there was anything new and she'd say "Not really."    
So it's just nice to know that there's a group for us.  Thank you.

Posted By: Mary B
Date Posted: Nov 18 2007 at 6:32pm
Flasparr -
I see you were diagnosed on 9/11/07.   I was diagnosed on 9/11/01.  That was something - the towers falling down at about the same time I was taking a phone call at work from the radiologist with results.  The towers put things in perspective.  I'd think - its so much worse there.
Hope all goes well with you and your learning and living with grace. 
Go well.
Mary B.

Posted By: kirby
Date Posted: Nov 18 2007 at 7:37pm
Mary, welcome.  Someone similar to me ! I was dx Feb. 2001. I always listened to these women taking hormonal treatment and such and was so glad not to have all the side effects yet at the same time wanted to scream "what about me, where is my protection". When and how did you learn the cancer you had now had a name "triple negative". 

Posted By: Indi
Date Posted: Nov 18 2007 at 7:44pm
I am so overjoyed to know there are a few sites focused on this somewhat "rare" form of breast cancer.  
The unknown variables and jumbled facts have yet to unlock the mytery door to a cure or even clue to understanding the peculiar nature of triple negative hormone receptor cancers.
Reading the current research about the ongoing studies, the more confusing it seems
Is it really a "breast" cancer?  Are there receptors which have somehow lost the ability to receive signals from other hormones and proteins?  Is there a mutating cell formation induced by the polutants, plastics, and environmental issues; global warming, nuclear waste, greenhouse gas, chemical spills, pesticides, petrolium use, tephlon, radiation exposure, childhood diseases and even the side effects of the medicines used to prevent them?
The questions and connections to these rare diseases are endless. I am amazed  by all the science, research and medical conquests; I am also somewhat disappointed, as one of the "little nobody rare forms of cancer", because sometimes I think poison leads to more poison, while our main objective should be to care for our little blue and green planet; earth.
I have trip neg Invasive Ductal Carcenoma Grade 3 with vascular blood invasion present, and  found the actual 1.2 cm lump that grew to 1.7 cm in less than two weeks; nasty, long, 2.2 mm from the chestwall; clear sentinal nodes; took 4.  Had some surgical hematoma and seroma infections.  Endured Adriamycin/Cytoxin x 4, 12 weekly Taxol treatments and was allergic to it; had to take mega steroids; still don't know why I was  not given docetaxol; would have likely not caused all the physical neuropathy and problems I have now.  The radiation made the joint, muscle and anemia worse about four months after rads ended. 
This all began on Thanksgiving, two years ago when I finally found the lump
I knew it was there, but dense breast tissue prevented mammograms and ultrasounds from locating it.  The pain was intense for many years; later was told the tumor was wrapped up in a bundle of nerves, another reason as to why it wasn't detected.What infuriates me is the fact that I was treated like a crazy hyprochondriac, fibrocystic breasts, who was being a big baby.
That is a little part of the story, it's long, boring and extremely annoying when I think about any of it.  Still think I am in denial after all this; but
I am living.  I am breathing. I love my life, and husband, family, friends...
my dogs and cats.
Life is good, but cancer, no matter what form it takes, it a cruel horrifying monster, a dragon, a terror. 
Thanks for being here, and I hope you are all well.  I hope you enjoy the Thanksgiving holiday, as I shall.  I have much to be thankful for regarding this experience.

Posted By: Mary B
Date Posted: Nov 19 2007 at 2:40am
Kirby -
I got the pathology results in 2001 and knew it was er pr negative and her2nu (sp?) ...negative.. At that time I don't think there was much good research about what that meant.  At least I was at Mass General Hospital in Boston and did research in their library at the time and didn't come up with much and the Doctors didn't say all that much except there had been recent research to comfirm it didn't help to take Tamoxifin.    I think my oncologist or a nurse practitioner this year said..."oh, and since you are triple negative...blah blah..."  I think the research reports this year sparked that.
By the way, I forgot to say I'm 56, diagnosed when I was 50.
Mary B 

Posted By: lisab
Date Posted: Nov 19 2007 at 5:09am
Dear MaryB, I too am triple negative, 57 years old, originally diagnosed in 2004 and now mets to the chest wall in 2007.  It's my understanding this year's breast cancer symposium in San Antonio in December will focus on triple negative breast cancer.  That is a good thing; I am anxious to hear what they have to offer. 
I was on a teleconference one evening and talked with a young woman who is being treated at one of the big hospitals in the East - either Sloan-Kettering or Dana Farber.  She is also triple negative.  We talked about the fact that there doesn't seem to be anything treatment-wise for us and that all I ever hear about is treatment for women who are not triple negative.  Anyway, she told me her oncologist told her there is so much on the horizon for triple negative BC and not to feel left out.  I was very encouraged by this. 
Also, I was on a conference and a doctor from Sloan-Kettering talked about breast cancer and how there is never a "last" drug.  He said there are so many things available to us and we should never give up.  I also was very encouraged by this. 
I want to add a note here that I read in a previous issue of CURE Magazine.  When I read it, it summed up exactly how I've been feeling about triple negative BC for a long time.  If you get a chance, read the article in its entirety - there is hope for us.  Here's an excerpt from the article:
From CURExtra online:
When Cindy Coleman went for a biopsy after feeling a lump during a self breast exam in 2002, she went straight to the computer to learn as much as she could before her next doctor's appointment.  When the doctor told her that her cancer was negative for both estrogen receptors and the overexpression of the HER2 gene, she already undersand what it meant - the targeted agents that had been publicized in the news did nothing for her cancer. 
"I can tell you that every time I heard of or read of an announcement of some new medication that was promising for women with breast cancer, only to read or hear further that it was for women whose cancer is hormone driven, my heart would sink and break into a million pieces," says Coleman. 
This definitely caught my attention and I continued reading the entire article.  I hope you get a chance to do so as well.  I think triple negative BC is getting alot of press just recently and I am very hopeful.  So is my oncologist.  I hope this helps a little. 
Love and hugs,
Lisa B.

Posted By: becky walden
Date Posted: Nov 19 2007 at 6:19pm
Star dear fellow superwomen.
i am also so glad to have found this website. god work is never done!!
i am 40 year diagnosed in august of 2004 with TNBC. Three years out. i am also a registed nurse. i am sorry to hear about so many rude and need a new job of oncolgist. luckily mine was great, funny, and knowledgable. i too am SCARIED with this dx. i had no family hx or risk factors. but oh well . cancer has no rules.  cancer marker are a great indicator. the number is determined by each person marker after chemo and a example mine was11 during chemo and after it has remained around6-7. if possible always get a port it is so much better for you veins . i had a lumpectomy 2b  3cm mass with 1 postive node.  4AC 4 taxol with 33 radiation treatment. the chemo was every 2 weeks . i understand most patient are now every 3 weeks. alot of you are wondering about your hair coming out. i know my head was tender like a having several bruising. it began falling out the next day. a question i have about is the nipple area on post radiation site i still have edema around the nipple and very tender to touch.  again i am so happy i found this  site i have 1 daughter and great hubby. matter of fact today is our 19th year of marriage.  HANG IN THERE PUT ON YOUR BOXING GLOVES AND KICK CANCER BUTT! WITH CHRIST ALL THINGS ARE POSSIBLE . MAY GOD BLESS YOU ALL.

blessed becky

Posted By: trip2
Date Posted: Nov 21 2007 at 2:30pm

Hello Becky and welcome.Smile

Congratulations on your anniversary!


Stage 2 2003
Stage 1 2007

Posted By: Arnica
Date Posted: Nov 25 2007 at 5:21am
I live in a remote rural area where there are no support groups for BC or C patients in general.  It is 2.5 hours to my onc office.  My naturopathic physician lives in a different city 3.5 hours from me.  I live alone. I support myself.  I'm working with the post-rad fatigue.  
I'm trying to move into a new part of my life - post treament and aggressive followup while trying to re-establish some sort of normalcy and well being.  In order to do that I am trying to build a network of support and information. I hoped this forum would be part of that.  
Yesterday I posted a mesage that included the fact that I hadn't had chemo.  There were two responses telling me I made a bad decision, and encouraging me to change my mind.  This upset me (evidenced by my replies to the resonses.)  I was upset because I was told I was wrong, without any appreciation for the facts or reasons I made that decision, or the agony I went through to make it, or the numbers I based it on, or counseling I had from doctors and others.  I was upset because I was told I should change my mind now, which is not possible.  I was upset because my onc told me the most important thing was for me to be comfortable with my decision either way, and I know I never would have been comfortable with it either way. And I was upset because I was told a horror story of what surely lay in store for me for not having chemo.
I need a safe place to discuss my situation and learn from other women who are facing the same things I am and understand how I feel and who know more than I do.  I am very disappointed to feel so rejected here by a lack of appreciation for the fact that we are all different.  I would like to know if there are parameters that I've gone beyond. Surely, this is a time in our lives when we should be allowed and encouraged to speak honestly without being rejected or confronted or ostracized.

Posted By: Nancy
Date Posted: Nov 25 2007 at 9:01am
Dear Arnica,
I am Lori's Mom. I am not the one dx with cancer.
Lori did not want to have chemo. I did not want her to go through this terrible regimen. One of her older sisters did not want her to take the chemo. I saw what our grandson went through after being dx with leukemia.
You and only you can and should make the decision as to your treatment. I cannot begin to imagine what Lori would have experienced if not for her loving and supportive family. Chemo is not a "walk in the park". I can say that and I have not been the one whose body has had to endure the horrible side effects. You are going this all alone.
Lori has said that if the cancer returns...she will never have chemo again! I hope that she never has to make that decision ever again.
Please know that I and all the women on this board are here to support you, no matter what your decision. Some have been down the road more than once, and some, just like you,  have been alone through the entire process. 
You are not alone dear Arnica. Every person is different...every person's body reacts differently to the treatments they are given. You do have a safe place to discuss your feelings and your situation. You and only you can take the infomation you receive and make the decisions that are right for you. Lori couldn't even process the information when she was dx. She still has a difficult time thinking about what the future will bring.
We all live day to day and none of us ever know what the future may bring. Please continue to post. You will not be alone anymore.
Love and many hugs,Hug

Posted By: trip2
Date Posted: Nov 25 2007 at 9:54am
I'm so sorry that you have become upset. 
Of course you took alot of time and gathered information to decide how to handle your situation and you decided to do what was best for you as it should be.
There are not any guidelines here, we are all different and have different situations and beliefs but our commonality is triple neg bc.  Some feel one way and others feel another.
I have read that once we have made a decision we should move forward and be satisfied that we made the best decision at the time and don't look back.
No one knows what the future will hold for any of us.  Of course you can speak openly, we all learn from each other and I hope you will stay with us, we'd love to have you here,

Stage 2 2003
Stage 1 2007

Posted By: Arnica
Date Posted: Nov 25 2007 at 6:47pm
Thank you, Nancy and trip, for those responses. I am almost in tears, getting your acceptance and support, and knowing I can stay here, that it is a safe place.  I am sure that I over-reacted. Well - who knows about that anymore, right? But I have been online long enough to know better than to just react and post or send something without taking some time to get over my first emotional response. I do know that everyone here is facing huge challenges, and I know there are times when we are sad, or discouraged, or fearful, or angry, and there is no need for me to direct any of those feelings toward any of you. Thank you for being so understanding.

Posted By: kirby
Date Posted: Nov 25 2007 at 8:11pm

Arnica,  it is hard getting to that place of peace sometimes. Especially with cancer. We all have had difficult decisions to make and trusting ourselves with that ability with the knowledge we have or had isn't easy in an ever changing world of technology.

One of my mantra's when I am feeling low is the "15 minute rule" someone told me before I began treatment. That is to allow yourself 15 minutes every day if needed to fully feel sorry for yourself. This has worked wonders for me. Better spirits will come.

Posted By: Indi
Date Posted: Nov 25 2007 at 10:01pm


Please don't feel bad about the choices you make.  This experience is the most personal and difficult imaginable.   The only people who underand this crises and panic brought on by the emotional turmoil in chosing the "right treatment" are generally other cancer victims.
Good grief, there are so many opinions and daily news is always reporting on some controversial drug for breast cancer.  I am still wondering if  I made the right choices.  Just finding reliable information or a physician you are able to trust is confusing and difficult.
Trusting your inner voice, and hopefully having  faith in your doctors, and having guidance through the support of others who have gone through what we are going through now, helped me.  Your heart will ring true.
We need site like this tp help guide us through a dark and frightening world of breast cancer terminology, medicine, new treatments, old treatments, and what is specifically targeted to your individual case.
I think you're great.

Posted By: Jessie
Date Posted: Nov 27 2007 at 9:47am
I hope all these responses have already made you feel better about choosing not to take the chemo !  Are you feeling the love and support here? Hug
Reading all the forums, it does seem as if all of us do chemo and/or radiation.  Not so, I too chose not to take the chemo, and since I had a dbl mastectomy, there is nothing to radiate.  My decision was for different reasons, having to do with heart issues, etc. 
I'm very satisfied with my decision and I so very much want you to be also.  The benefit I was quoted by my Onc to taking chemo was 5%.  In my case it was very easy to decide the RISK of taking the chemo outweighed the possible benefit. 
I'm taking the path of doing everything under my power to be healthy -- eating lots of fruits and veges, no sugar (weeel, maybe I cheat alittle there), more exercise, sleep, fresh clean air, not spending much time in overly polluted areas, etc.  Your 'remote' area I bet is perfect for healthy air.  Not hard to imagine that building my immune system will make up for that 5%.
I have very positive feelings hat I didn't take the chemo.  Remember that it also does damage -- and you aren't making your body vulnerable to all that.
Hope I've helped relieved some bad feelings.  Written words are sometimes stronger than intended.  I feel loved in a very special way here on this forum and very free to post my thoughts and fears.  I hope you come to feel that way also.
I'd love to know how you're doing.  Also, I'm fascinated, and a bit envious, by your living in a 'remote area' --- where ?  What do you do ?  l can retire from work in about 2 years and I'm hoping to move to a somewhat remote, very serene spot.  I'm sure I'll spend alot of time by myself because my husband wants to do alot of 'adventure' traveling -- I'm not an 'adventurer', so I'll only go on the easy trips.  Actually I've had to travel alot in my job, and now want nothing more than to stay at home.
Enough,  let us know how you're doing.

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!

Posted By: phillyborn
Date Posted: Nov 27 2007 at 10:43am
Just found this website, after typing in "triple negative breast cancer". Did so after checking out and finding hardly anything about our type of cancer.
I was diagnosed with it in early 2005, at age 63, and went through 8 chemo treatments following a lumpectomy, and ended with 34 radiation treatments where the original cancer was found. Had a sentinal node biopsy that turned out negative.
Other than feeling lousy for one day of each of the chemo treatments, they weren't so bad. Nowadays, they infuse an anti-nausea drug prior to the chemo, which allowed me to work fulltime during 6 of the 8 treatments. Had 4 sessions of adriamycin/cytoxin, then 4 sessions of Taxol.
Now, it's returned. Found the lump myself last July and, after testing and more biopsies, found it has spread to my lymph nodes, a nerve, and arm muscle, all on the same (right) side. Had surgery on the first 2, and am slated for radiation to hopefully rid myself of the cancer around the muscle. Am also taking Xeloda, an oral chemo drug, although don't know how effective that'll be, as they also give it to patients with hormone positive cancer.
Now, I'm concerned about life expectancy. Do you know what it is for women with triple negative?
Best wishes!

Posted By: phillyborn
Date Posted: Nov 27 2007 at 11:46am
Hi, Arnica,
As long as you feel comfortable with your decision, no need to look back.
Everyone's got an opinion, and you're entitled to yours.
I was diagnosed in March 2005, at age 63, with TNBC. As I go to a major cancer center, I took their advice and went through the chemo after a lumpectomy (4 AC, then 4 T, every 2 weeks), followed by 34 radiation sessions. Even had genetic testing done, that turned out to be negative for both BRCA genes.
However, this past July, I found another lump on the same side, below my armpit, that was removed and found to be cancerous. Through testing, it had also spread to my lymph nodes, an adjacent nerve, and arm muscle. The first 2 I had removed, and the latter will hopefully be taken care of with more radiation, starting next week.
So, as you can see by my experience, there's no guarantee that chemo will get one into complete remission forever.
I'm interested in alternative modes of therapy; i.e., vitamins, minerals, etc., should this reappear a third time. What are you trying?
Best wishes!

Posted By: phillyborn
Date Posted: Nov 27 2007 at 11:49am

Does anyone know about new treatments for TNBC, specifically?

How about average life expectancy for those of us with recurrent TNBC prior to the 5-year mark from original Dx?


Posted By: kirby
Date Posted: Nov 27 2007 at 2:44pm
I had decided after reading Lance Armstrongs book when I went thru chemo that so much of this is all "a crap shoot". To quote him "I 've seen the most positive attitudes die and the crabbiest  live". It is all so difficult...but who wants to spend energy on the worry when we really don't know whether to worry or not.
When I first found this site I was freaked out with so much I was reading. I was dx in 2001 at age 45. They certainly didn't call it TN then.With my SN biopsy, 13 nodes were removed. They were just starting to do SN and my surgeons words were "better safe than sorry." I had a 2 cm mass. I only had 4 rnds of AC. I think just luck of the draw that I haven't had a reccurance.  Technology has changed and things are done differently now.
We do have choice in how we want to live. Hopefully we can all find that place of peace.

Posted By: Arnica
Date Posted: Nov 29 2007 at 2:18am
Hi Jessie, thanks for the encouragement. I live out in the plains about 2.5 hours from Denver and 3.5 hours from Colorado Springs. Yes, I'm trying to do some of the same things that you are to make up for those numbers.  My instructions are low fat diet full of leafy green vegetables, protein with every meal, no white sugar, white flour, or white rice, and a vitamin and supplement regimen. 

Posted By: Arnica
Date Posted: Nov 29 2007 at 2:44am
Hi Phillyborn,
thanks for the encouragement. I'm sorry to hear that your cancer came back. You said it came back in the muscle, too? Did you have symptoms with that?  Re alternative therapy, I'm discovering that what I'm doing is "complimentary" therapy rather than "alternative" because I am doing it in conjunction with surgery and radiation more than I am doing it as an alternative to chemo. I had "very" low levels of Vit. D, so am taking 2000 units. John Hopkins U. developed a supplement from broccoli sprouts that is the concentrated chemical sulphoraphane glocosinolate -- the antioxidant that's the reason we're encouraged to eat lots of broccoli -- and I take that, a high dose of melatonin, Omega 3 oils, and a multi-vitamin. I asked if I could take tumeric capsules and was told it was ok. For radiation therapy-related fatigue, I have CoQ10 and L-Carnitine. I just started having massages for stress and learning how to do self-massage for lymphadema prevention. If I didn't have to drive so far to an acupuncturist, I would do that for fatigue. 
I'm not claiming I get this right all of the time - but that is the plan.

Posted By: Arnica
Date Posted: Nov 29 2007 at 3:00am
Kirby, you said, "I had decided after reading Lance Armstrongs book when I went thru chemo that so much of this is all "a crap shoot". To quote him "I 've seen the most positive attitudes die and the crabbiest  live". It is all so difficult...but who wants to spend energy on the worry when we really don't know whether to worry or not. "
I agree - it is a little unnerving to be told by lots of people that my prognosis depends on having a "positive attitude." In the book Breast Cancer Journal: A Century of Petals by Juliett Wittman, she writes that living in Boulder, Colorado, she was particularly exposed to the idea that we create our own reality, including disease, and how she struggled with that. Her therapist explained to her one day that a study he had just read found that women with breast cancer who had a hostile attitude toward their doctors had a better outcome that those who had a positive attitude all the time.  I'm really really paraphrasing here because I can't find the book.  And I'm not advocating for hostile or against positive attitudes. And I'm not saying there is NO mind-body connection. But I don't think we created our disease with our minds and I think it's a huge burden to try to have a "positive attitude" all the time.
I agree - I don't want to spend energy worrying.  It is another life lesson to figure out how to be vigilant without worrying, and to have peace of mind after so much anxiety.  Smile
>>When I first found this site I was freaked out with so much I was reading.
I have not been able to read much on the site yet - too overwhelming. But I'm so glad it's here and glad I found it, and wish I had found it sooner.  I'm still barely navigating around to find the conversations that I'm in and finding time to be thoughtful with replies.

Posted By: kirby
Date Posted: Nov 29 2007 at 6:37am
My mother was only 64 when she died from ovarian cancer. She tended to live in denial [I wonder where I got it ?]. She didn't really deal , at least not outloud to anyone with the fact that she was probably dying. She was always so optimistic. I have been known to tell people who have not really dealt with cancer that try to tell me about having a positive outlook " that if that was all it took my mother wouldn't be dead". That usually stops them in their tracks.
On a positive is so much easier and more gratifying to try to live being happier. We do have choice in that. I do have to rearrange my thinking to be there as often as possible.
Arnica, I laughed at myself as I just discovered this past week how to manuveur to other topics. I am not in the throngs of treatment either so my survival mode is completely different.

Posted By: lisab
Date Posted: Dec 05 2007 at 3:35am
Dear friends, I have found that if I allow myself to feel whatever I am feeling, I do much better, instead of trying to force myself to have a positive attitude.  I also believe it's the luck of the draw as far as cancer is concerned.  We do the best we can with what we have and there is nothing at all wrong with questioning what's happening to us or what sort of treatment we are getting. And if we don't like what we hear, we can always ask another doctor.  Seems like every time I go for chemo, I ask my chemo nurse the same questions I ask my doctor just to see what she says.  It helps me alot.  Also, I do believe in positive thinking and positive imagery to help with treatment or surgery.  It's just that I don't believe thinking a certain way can make the difference in how my cancer affects my body.  I do believe it helps how I approach it, though. 
Stats?  I don't listen to them.  I have found that many of the stats that are given are from studies that have been done in the last five years or more, and because there is so much new and on the horizon, the stats just don't mean that much to me.  That's just my personal opinion.  Please don't think, however, that I don't believe these studies are not good - on the contrary, I am eternally grateful to the women who participate in them.  These pioneers are the ones who are giving the rest of us so much hope. 
Love and hugs,
Lisa B.

Posted By: Mary B
Date Posted: Dec 05 2007 at 5:03pm
Lisa B-
Well said.  I am also a big believer in letting yourself feel what you feel.  I had a malignant melanoma lesion removed from my arm in 1982.   I had a terrible attitude then, sad, angry, confused, sure it would kill me.  And here it is 25 years later, no recurrance (-the breast cancer was something different.)  
Good reminder on the relevance of statistics too.  
Thank you very much for writing.

Posted By: BrendaF
Date Posted: Dec 07 2007 at 4:25am
Hi, ladies.  I really hate to be joining this club.  I had BC treatment in 2005, and thought I was going to make it through.  But now, it looks like I've got lung mets.  No biopsy yet, but four active nodes showed up on PET.   So, here I am. 
I've been looking at a PARP 1 inhibitor trial in Indianapolis.  Does anyone have any information about PARP inhibitors?

Posted By: texasgirl
Date Posted: Dec 07 2007 at 4:40am
Hi Brenda,
Two girls on this site, Calgal and Lilian, are on this trial.  They are both BRCA positive.  I think they are having good results.  Do a search by person for Calgal and you could Private Messenger her.  She has a world of information and also had lung mets.  If you can not get hold of them let me know I have their personal e-mails and I am sure they will help you.

dx 5/11/07 (Age 41), Stage IIIC, Grade 3, 12 weekly taxol, 4 FAC, 8.5 cm, Extensive positive nodes, Masectomy 0/17 nodes, 30 Rads, Currently NED

Posted By: CarynRose
Date Posted: Dec 07 2007 at 7:17am
The PARP Inhibitor trials are open to BRCA+'s.  Other trials are open to triple negatives.  However, I believe BOTH types of trials require that you have had a 'failed treatment course for metastatic disease.' 
I was dx'd with lung mets (8 tiny nodules) in July and did Avastin/Taxol and radiation (for tumor in my lymph node), then we added Carboplatin and Eribitux.  As of my last PET scan, I'm NED.
Please feel free to contact me if you have any questions about my treatment.
Best regards,
dx 6/2007
Stage IV (lymph node and lung mets)
Avastin+Taxol w/ Rads 8-9/2007
Added Carboplatin and Erbitux 9-12/2007
11/2007 -- NEDbr
Orig. dx - Stage 2a, BRCA1+, Triple negative, neg. nodes, Grade 3

Posted By: phillyborn
Date Posted: Dec 08 2007 at 6:45pm
Hi, Arnica,
Sorry for such a delayed reply.
No symptoms re: the muscle in my arm. The surgeon found it when it removed the lymph nodes. As a result, I'm scheduled to start 5-weeks of radiation beginning on the 17th or 18th. My doc is hopeful that the radiation, combined with Xeloda pills I'm taking, will put me in long term remission -- he actually used the word "cure".
Thanks for the info on complimentary supplements. I'll check them out with my doc, although he doesn't want me to take anti-oxidants during the radiation treatments, as he thinks they would diminish the anticipated results. I've got a masters degree from the University of Pennsylvania, but I still don't get the reasoning behind that!
Hope you're doing well, and are enjoying this season.

Posted By: Nikol
Date Posted: Dec 18 2007 at 8:33am
I am new on this forum. I was diagnosed with TNBC at the age of 34. I live in Central Europe. I am very glad to find this forum. It is fantastic that there was 2007 TNBC Symposium. Smile 
I am interested in research and clinical trials, studies about this type of breast cancer. I have seen that there are generally many clinical trials in the USA. Do you know please about any clinical trials, studies related to breast cancer in Europe? Are some trials or studies open to citizen of various countries?  I know that there was seldom some research about TNBC. If you have some informations about it I would be thankful.

Posted By: chaya
Date Posted: Dec 18 2007 at 10:53am
Check out this website:

There is a lot going on in Europe. The most interesting (i.e. readable) article I found today was from doctors in Belgium. I've also seen articles by Italian doctors.

Posted By: kirby
Date Posted: Dec 18 2007 at 11:51am
I am always curious about article's from europe, especially Italy. My ex husband is from Italy and 20 years ago his relatives from Rome would come to the states when there was a descrepency in their mammograms. None have had breast cancer. Do you think the italians could make this many advances this fast? My info is certainly dated and limited to a very small circle but at that time those I knew were not real positive about their health care.

Posted By: Nikol
Date Posted: Dec 18 2007 at 11:52am
thank you for your idea. On this websites dedicated to Breast Cancer Research are also informations about Conferences, trials, which are useful for me.  I will prove it . 

Posted By: chaya
Date Posted: Dec 18 2007 at 7:59pm
I really didn't keep track of exactly how much was coming from Italy - I just noticed that there were papers from there.

My guess is that it's like it is all over - some doctors are great, some awful, and most somewhere in between.

Also keep in mind that some people will go for the best because they can. I know of more than one New Yorker who has gone to Sloan even though it's not covered by their health plan.

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