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Survivors Needed

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CrunchyGirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CrunchyGirl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 07 2014 at 11:09pm
Just passed my 1 year since start of Chemo mark. I had a minimal response to chemo, but it did not grow, so surgery showed no other involvement. So now i am going into surgery this week again for capsular contracture caused by an infection around the implant I think.
So the saga continues, but luckily it's only the reconstruction problems that continue. I'm hoping this surgery will resolve the pain I've had for 6 months. Really ready to get back to life again.
So after 1 year Cancer free, 4 more to go until I feel out of the woods. 
What supplements are you survivors taking? i know there is a thread on this somewhere?
3cm in left 31yrs 4 Red devil, 12 taxol, neg nodes, surgery July 2014. Tumors shrunk by 1cm all negative. Now cancer Free!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote iluv2sing Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2015 at 6:52am
NED and Thriving since 2009!!!!  Live, Love, Laugh Big smile
I take a multi-vitamin and call it a day, as I'm on so many prescribed meds for other issues (diabetes, cardiomyopathy and peripheral neuropathy) that I don't want any extra pills.



Edited by iluv2sing - Oct 05 2015 at 6:56am
Raymon
Rejoice Everday!
Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA-
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Kellyless View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2015 at 9:56am
Wow Grandma! Thanks for posting!

I count from the end of treatment, last month marked 6 years NED. My daughter is feeling broody, I may be a grandma in the next couple of years
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DDBSurvivor Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2015 at 12:31pm
I was diagnosed with TNBC in October 2010; Stage 2B;  partial masectomy, 7 chemo treatments and 30 radiation treatments; I have had no recurrence; 5 years clear!
Stay positive; when worried, head for the kitchen & give yourself a nutritherapy treatment; a smoothie with plenty of greens, blueberries, flax, hemp & remind yourself that most women do survive. I have rarely gone online as it causes me to think about it too much and unfortunately too many of the posts are negative. 

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Jessy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jessy Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2015 at 9:05pm
Your post was very helpful to date I have only met 2 women with TNBC. One is 5 years out and one is at 9. When I ask most women what kind of BC they have they can't answer me. Majority don't actually know! This boggles my mind. Maybe I know because I have TNBC and when I got diagnosed I felt complied to read, read, and read all about it. I'm not sure if that was s good thing or a bad thing. But I'm the type of person who just has to know the truth no matter what it is.

I was diagnosed 42 yrs, TNBC .8cm, stage 1A, grade 3, had 3 nodes removed all clear, double mastectomy with reconstruction. BRCA 1 positive. Taking chemo now 4 rounds of DD AC, then 4 rounds of DD Taxol. Getting ovaries removed and tubes 2 months after chemo.

Here's my question: my report read that Cancer Cells were found in my lump/vascular system but not in my lymph nodes. Does anyone know exactly what that means? I know what my dr told me, but would love to hear what other doctors have told their patients.

Thank you all!!
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2015 at 9:35pm
Dear Jessy,

welcome to our TNBC Foundation family.

My daughter inherited the BRCA1 mutation from me and was diagnosed with  TNBC in 2004. She has had all the surgeries and is now an 11 year survivor, NED (the loveliest acronym in the English language to me...NO Evidence of Disease).

Fortunately we have the knowledge about the BRCA mutation so that women, like my daughter, could take action to hopefully save their lives unlike my maternal grandmother who died of ovarian cancer when she was 47 and my mom who died of metastatic breast cancer at the age of 46. They were clueless. I know it may sound crazy to some but my mom passed when I was 20. I was 16 when she found her cancer. I think about her and still miss her some 51 years later. It seems that, to a certain extent, there is a permanent hole in my heart.

So, now we have the knowledge about this pernicious mutation...but what an awful price women pay..my daughter included..some day, hopefully, there will be a way to 'fix' the mutation so that women do not have to do the surgeries. 

For now, it is what it is Jessy and I feel you have chosen the correct path. I hope you will have a gynecologic oncologist do you gynecologic surgery. Some women use their ob/gyns and I have been told by several gynecologic oncologists, I respect, that the 3-4 years of extra training in cancer that a gyn/onc has really makes a difference in being able to recognize cancer and also the gyn/oncs are trained in the special procedures needed when operating on a woman at high risk. 

My heart is with you and all here as you 'fight the fight.' Jessy, I pray your procedures are non-eventful and your recovery is swift.

Again, welcome. This is a lovely, supportive site filled with marvelous women and their wonderfully supportive loved ones.



Edited by SagePatientAdvocates - Oct 25 2015 at 9:39pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote made2b2gether Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2015 at 9:40pm
Dear Jessy,
Since you are brca+, can you get a second opinion or ask your now doctor to add Carboplatin to your Taxol regimen.
I assume you are doing dense dose AC first. Weekly taxol x 12 and carboplatin every 3-weeks. Especially for Brca + women, the addition of a platinum (carboplatin) has shown to have a greater response on pathologic response to treatment, for tnbc. Please discuss as it may give you more overall benefit.
Best,
Made2b2gether

Edited by made2b2gether - Oct 25 2015 at 9:42pm
DX Jan06 `14. IDC TN 2.0cm. Grade 2. Neoadjuvant: Taxolx12,FECx4. Post Surgery LX- Tiny Micromets found in 4/17 removed LN- 6mm residual. Wide Radiation 25x. Carboplatin AUC 6 x 2, AUC 5 x 2
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2015 at 9:50pm
Dear Jessy,

p.s. did you mean lymphatic/vascular system rather than lump/vascular? 

Please don't try to find an answer to your question here. If you are being seen by a Breast Medical Oncologist and a NCCN or NCI facility please go back to your oncologist and have him explain exactly to you and what he intends to do about it and I would also suggest you get a second opinion from a BRCA savvy Breast Medical Oncologist at a reputable cancer center.

we don't give medical advice here but certainly the thought expressed by 
Made2b2gether should be explored with your physician as she suggested. You need to make sure, as best you can, that you are seeing a savvy TNBC/BRCA expert.

please feel free to send me a PM if you would like to talk. I will not give you medical advice but maybe a talk will be helpful and I am a volunteer patient advocate so no bill.
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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nestle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nestle Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2016 at 5:02pm
Hi there just curious??
you had triple negative breast cancer??

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nestle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nestle Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2016 at 5:52pm
Hi there
what was your treatment protocol?

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nestle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nestle Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2016 at 5:56pm
Hi there
I am trying to figure out if I should have a lumpectomy or mastectomy 
Dx with tnbc stage 2 grade 3 tumor is 2.3cm 
finished 4 rounds of ac & 4 rounds of taxol
I'm scheduled to have macetomy with reconstruction 2/24
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nestle View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote nestle Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2016 at 6:02pm
what kind of surgery did you have?

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Post Options Post Options   Thanks (1) Thanks(1)   Quote lisab Quote  Post ReplyReply Direct Link To This Post Posted: Mar 15 2016 at 7:39pm
I have TNBC and currently am 8 years post chemo treatment with no known recurrence.  

There are more and more of us - I feel so grateful I am still here.  
Diagnosed June 2004. Lumpectomy and radiation. BRCA2+. PBM w/DIEP Recon March 2005. Mets in chest wall June 2007. Chemo (Gemzar and Carboplatin) with radiation completed January 2008 - 5+ years ago.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2017 at 6:47pm
Please accept my gratitude for each of you here, and those who were my life-line before, during and after treatment.  Stumbling across this site was the best thing that could possibly happen.

I know I haven't been here in a long time- moving on with life.. but this place will always be my true home.

I'm a little over 5 years out from neoadjuvant tx.  Sometimes it feels like a lifetime ago, sometimes like yesterday.

 I did want to mention my eldest granddaughter wanted to be tested for the BRCA1+ mutation. It came back positive. Unhappy    She's in her 1st year of college life, and eating it up! Her sister, my middle who's 15 months younger chose not to be tested for now.

Knowledge is power.  But frankly my granddaughter's news deeply saddens me.
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 11 2017 at 11:51pm
Thanks for sharing, Mindy..sorry to hear the news about your granddaughter but our family feels that 'knowledge is power.' I admire the fact that she decided to test. The information can save her life.

My daughter in August 2016 celebrated 12 years survivorship. She is NED, fit and doing yoga 4-5 x a week. 

I have been very busy with my patient advocate work so I post less frequently but as many of you know I am still actively helping folks in our wonderful TNBC family; I just do it privately and confidentially and will continue to do so.

my heart remains with all of you.

always,

Steve

p.s. I recently submitted by Myriad BRCA+ result to getcolor and because of that the rest of my children can test for the mutation at a cost of $50 each; a truly wonderful program.

https://www.color.com/family-testing







I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susanbink5 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2017 at 11:39am
Hi, my name is Sue and I just want to let all of you TNBC ladies out there that I am a Triple Negative survivor 14 years out. I believe the reason you don't see many posts like mine out there is because life keeps us too busy to remember there are ladies out there who needs to hear from us. God bless and keep the Faith!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susanbink5 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2017 at 12:11pm
Ditto! Just recently joined this site. I'm 14 years dancing with NED
TNBC survivor 💗
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susanbink5 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2017 at 12:16pm
Good for you ! I try not to go on very much either but it is good to read positive stories and our sisters need our support 💗 I'm a TNBC "14" yr survivor !!
Woohoo
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Susanbink5 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2017 at 12:18pm
I am also grateful for posts and for people who take the time to share...💗God Bless"
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Post Options Post Options   Thanks (1) Thanks(1)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Mar 29 2017 at 3:03pm
I will be 7 years in May.  We do forget (at least somewhat) had bad and scared we were at the beginning.  All long term survivors were such a blessing for me at the beginning.  Still are actually.  We are out there just life has continued and we got busy.  Hang in all
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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