Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM by banr
Posted on: Dec 16, 2013 09:46PM - edited Dec 16, 2013 09:53PM by banr
banr wrote:
Just an idea came across my mind.
Can we share stories and examples of long term triple negative survivors. They dont participate in such forums. So its only by word of mouth that we get to hear about them.
But I also see few of them in this website, who themselves are long term survivors. I feel so happy to see how they have moved on so beautifully with their lives.
I know two such women. Both close to 10 years out of diagnosis. Both without any family history of cancer.
One diagnosed in 2003 and another in 2004. Both were in their late 30s then. Those days they were not aware that they were triple negative. But they say that tamoxifilin didnot work on them, they had only surgery chemo and radiation. So in all probability they were tnbc patients.
One was stage 1, another stage 2b. One had 6 rounds FEC and another had 6 rounds TAC. They both have yearly check ups now and are leading completely normal lives.
I also know another woman, who got diagnosed 5 years ago but stage 3, body didnot respond to tamoxifilin and had complete mastectomy. She had 6 rounds TAc, plus rads. Living a normal life...and put the entire episode behind her.
If you also know someone having similar treatment and diagnosis years ago and is still living ...please share. It will be very insipiring.
Love u all!!
Jul 19, 2014 07:04AM Lettinggo wrote:
Hi Placid thank you for the information. I had SNB after chemo and all 4 were clear. wished i had it done before the chemo. I have heard of your PS - very well know. take care, talk to you soon!
Jul 22, 2014 09:59PM yellowdoglady wrote:
I can't call myself long term, just alive and well at five and a half years out. I was TNBC, stage IIB, four of 14 lymph nodes bad. Did surgery, 6 rounds of chemo, 7 weeks of daily radiation. Was wiped out for a year or two, though I worked through it all. Today, I walked 14 miles and feel great. It's not what knocks you down that matters. It's seeing to it that you pick yourself up, and then go forward to see a sunset or sunrise and enjoy the beauty of it. Then the next one, and so on.
Jul 22, 2014 11:11PM SlowDeepBreaths wrote:
"It's not what knocks you down that matters. It's seeing to it that you pick yourself up, and then go forward to see a sunset or sunrise and enjoy the beauty of it. Then the next one, and so on."
yellowdoglady, I couldn't agree more. Love it!!
Jul 23, 2014 03:45AM MomMom wrote:
Yellowdoglady, Beautifully said!! Thank you for posting such a positive post and congratulations on reaching those TN important 3 and 5 year milestones! You have the right attitude - just put one foot in front of the other and you can walk those14 miles.
Paula
Jul 23, 2014 05:22AM simplelife4real wrote:
Yellowdoglady, thanks for posting! It's great to hear that someone with stage 2b is doing great 5.5 years later. Love it!
Jul 25, 2014 02:48AM sally9876 wrote:
lintrollerd, thanks 3 years is still very encouraging, especially with lumpectomy. Wishing you all the best!!!
Salky
Jul 25, 2014 06:12AM lintrollerderby wrote:
Thank you and all the best to you!
Aug 2, 2014 08:40AM carawolffm wrote:
Thanks to all of you who have taken the time to share your stories and the stories of others - they are like a lifeline to me and my family. I am writing because I am desperately looking for stories that can bring my sister hope. She was diagnosed with Stage III b TNBC in January 2014 - her tumor was very large and aggressive and grew to almost 10 cm in a matter of a few months (she had a clean mammogram just a few months before her diagnosis in November 2013), and she had 2 out of 2 positive nodes at the time of diagnosis. She then had about 6 months of neoadjuvant chemotherapy (taxol + carboplatin/AC, switched to abraxane due to alergic rx to taxol, and then switched to erebulin (halavan) after her response to abraxane tapered off), and her double mastectomy was just a few weeks ago on July 15, 2014. She is recovering well, but is feeling very hopeless because the path report said that all 15 of the lymph nodes removed had evidence of disease. The good news is that the erebulin seemed to be very effective because her former 10 cm tumor shrank to 1.6 cm at its largest diameter. She has looked for survivors who have similar circumstances to hers and can't find any and is starting to feel like it is because no one with cancer as aggressive as hers is still alive. If any of you have stories to share about survivors who did not have a PCR at the time of surgery and who also had all or many positive nodes removed at the time of the mx, I would be so very grateful. Thanks in advance for your time...love and strength to all of you. Sincerely, Cara (Melinda's sister).
Aug 12, 2014 11:23AM Gina2014 wrote:
Hello,
My initial test showed I had HER2+ but after 4 rounds of AC and 4 of Taxotere with herceptin following a bi-lateral mastectomy, a retest showed I was actually triple negative. I am going to be starting radiation soon and will have my ovaries removed as well. I am also BRCA1+. It's good to read about all the survivors because as any one who has just "googled" tnbc it can be pretty scary out there. The chemo I had shrunk my tumor from almost 3cm to .4cm which the Dr said was a great response. Thanks for all the positive stories!
Aug 15, 2014 10:40AM Gorilla12 wrote:
Yes! 10 years out - had stage 1C. I am married to a sweetheart of a guy for 4 years now and we are thinking of moving to somewhere warm. I have seen my kids graduate and move on happily with their lives. My husband said "now it is our turn to dance". I love that!
