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Lorene
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Joined: Jul 10 2010
Location: Alabama
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Points: 211
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Posted: Sep 03 2010 at 12:59pm |
Before this "very positive" site "disappears" again (I saw it some time ago & then never could find it again), could someone please tell me where it disappeared to & how to find it if it doesn't show up on the forums?
I'd certainly like to keep posting long-term survivor stories, as well as hear those from others! Thank you.
Let's Enjoy Each Moment,
Lorene
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dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
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SagePatientAdvocates
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Joined: Apr 15 2009
Status: Offline
Points: 4748
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Posted: Sep 03 2010 at 1:06pm |
Hi Lorene,
not quite sure what you mean about disappearing..from time to time there are glitches on the site and there are necessary repairs but not that often..
you should be able to find us at
www.tnbcfoundation.org
and you will always find a welcome..this is a wonderful resource.
good luck to you!!!
all the best,
Steve
Edited by steve - Sep 03 2010 at 1:06pm
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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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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
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Posted: Sep 03 2010 at 6:07pm |
Kirby,
We will never ever get tired of seeing you post. I was thinking about you when reading this thread early on and hoped you would post, thank you once again, continue to keep us inspired, we love it.
And.... girl, congratulations on your 10years coming soon, just awesome Kirby!  
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Stage 2 2003
Stage 1 2007
BRCA 1+
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nmunoz
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Joined: Jan 20 2009
Location: Miami, FL
Status: Offline
Points: 371
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Posted: Sep 03 2010 at 11:58pm |
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Thanks for all the wonderful posts!!!
For what it's worth I can also tell you a story of a wonderful woman that meant a lot to me and survived BC for over 20 years. My dad's older sister was diagnosed with BC at 36. It was 1983 and she lived in Colombia, South America. She had several infected lymph nodes and back then the treatment was a radical mastectomy (she wore a prostheses all her life) and she received radiation to her chest and arm. She had trouble with lymphedema all her life; I remember that she slept with her arm above her head and it always puzzled me when I was little. She never got married and didn't have any children so she was dedicated to us her nieces and nephews and was a very important person in our lives. Her bout with cancer impacted her life in such a strong way that she decided to become a nurse (she was a nutritionist before that) and she was head of the neonatal unit at a hospital in Colombia for many years.
When she was diagnosed she was not tested for hormone receptors (of HER2 of course) so we don't know for sure if she was TNBC or not. My dad and I speculate that she probably was since she was diagnosed at a young age and she was probably BRCA1+ like my dad and me. Well, her breast cancer never returned. She passed away from a different illness five years ago and I miss her everyday.
I've found hope in knowing her story and how she survived BC for many years even without having had chemo and better treatments like the ones I was lucky to have. She was a kind, loving and happy human being. Now I've shared this battle with her and even though she was not here with me I've felt her by my side all the time.
Best to all,
Natalia
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Natalia, 38 years
Dx TNBC 10/22/08, BRCA1+
Double Mx 11/20/08 with Recon.
3/37 nodes
Rads 7 weeks done 8/09
ACx4 every 2 weeks and Tx12 weeks. Avastin e/3 weeksx10 (Clinical Trial) Done Dec/09
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SagePatientAdvocates
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Joined: Apr 15 2009
Status: Offline
Points: 4748
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Posted: Sep 04 2010 at 12:12am |
What a beautiful story, Natalia. Gracias.
Your eloquence is matched by your lovely heart.
honored to be your friend, siempre,
Steve
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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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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
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Posted: Sep 04 2010 at 10:07am |
Lorene,
One thing that could be happening is that when a topic is started it is at the top of the posts in a certain section. Members reply, time goes on, other topics are posted and the older ones move down the list and onto the next page. So if you have lost a thread try looking at page 2 or 3 in the section you found it in, it should be there.
Also, if it goes to say the 2nd page and someone replies to a post later on it will bring the post back to the top of the list then start back down again..
Edited by trip2 - Sep 04 2010 at 10:09am
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Stage 2 2003
Stage 1 2007
BRCA 1+
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MMGabriel
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Joined: Jun 03 2010
Location: Chicago, IL
Status: Offline
Points: 52
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Posted: Sep 04 2010 at 10:46am |
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I appreciate you sharing. Going through this treatment is difficult, but knowing that there are survivors out there is heartening!
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5/10 Dx IDC TNBC, age at diagnosis 39, Stage 2, Grade 3, 2.7cm, 0/3 Nodes; ACx4/Tx4 dose dense; 6 Weeks Radiation
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SagePatientAdvocates
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Joined: Apr 15 2009
Status: Offline
Points: 4748
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Posted: Sep 04 2010 at 12:41pm |
To follow up on what Pam said above....and to avoid posts going unanswered....please consider starting a new thread under your name if you would like....Very few of those go unanswered, from what i have seen and if that does happen you can 'bump' it up by re-posting....Sometimes the posts that follow though may have nothing to do with the thread you posted and then the thread seems to take on a new life of its own...
Makes it confusing, at times, as Pam said, but that is the nature of a message board and I think the thing we all cherish here is the freedom to write what we like as long as it is with respect. We can all learn much from each other and also receive the support we need.
Generally the talk section seems to have the most participants but if your thread belongs in the metastases section please post there...we will try our best to respond..and also a special section for Spiritual Support under Support Groups..
all the best,
Steve
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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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Lorene
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Joined: Jul 10 2010
Location: Alabama
Status: Offline
Points: 211
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Posted: Sep 04 2010 at 11:29pm |
Thanks, Pam & Steve, for your explanations. I'm still not totally on to it yet, but closer. Can I blame my confusion on chemo brain?
Lorene
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dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
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Lorene
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Joined: Jul 10 2010
Location: Alabama
Status: Offline
Points: 211
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Posted: Sep 04 2010 at 11:41pm |
Natalia,
What a remarkable role model & legacy you have! Your Aunt appeared to be a person with strong character traits, with all her persistence.
Lorene
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dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
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trip2
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Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
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Posted: Sep 05 2010 at 7:03pm |
Lorene, you can blame your confusion on chemo brain, we all do it.
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Stage 2 2003
Stage 1 2007
BRCA 1+
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msm082455
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Joined: May 15 2008
Location: United States
Status: Offline
Points: 22
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Posted: Sep 05 2010 at 10:08pm |
WOW!
I knew that being a 6 year TNBC was amazing, but I had no idea, it was going to generate this much conversation!
I LOVE being cancer free!
For anyone going through treatment now, please know that it does get better! I am sure you hear it all the time, but please try and believe it!
Hugs to everyone!
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Michele,PA,55
Dx 8-04,IDC, Gr.3,3 CM
Lumpectomy w/SNB,9-04,clear margins,Triple Negative
4A/C,4TA,Rads, BRCA 1 & 2, negative
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Terri
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Joined: Nov 12 2007
Location: FL
Status: Offline
Points: 578
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Posted: Sep 06 2010 at 10:45pm |
Michele,
Your anniversary is 10 days and 3 years from mine (Aug 17th 2007). You should be proud to have given HOPE to so many of your TN sisters! God bless and MANY years of cancer free!!!
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm
2 nodes neg, Lumpectomy 10/07
Chemo: FEC 100 x 6, 35 rads
BRCA 1/2 NEG
PET/CT & Brain CT Nov 09
Brain MRI Aug 2012 NED
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CTB
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Joined: Mar 24 2010
Location: Downers Grove,
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Points: 29
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Posted: Sep 07 2010 at 12:43pm |
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Terri: I have a question regarding the timing of the scans that are in your stats. You had a PET and Brain Scan two years after diagnosis. My Oncologist does not feel that scans have a value in the absence of a symptom that would require further tesing. Did you present with symptoms or did your Onc just think that the 2 year mark merits scans or did you request them. Just curious. Thanks. Chris
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Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10
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swisscheeze
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Joined: Aug 20 2010
Location: Canada
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Points: 19
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Posted: Sep 07 2010 at 6:14pm |
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Lorene, thanks for posting. My treatment was the same three drugs as yours. Hoping for the same results !!It is soooooooo good to read about people who have survived this tnbc for many years.
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May 07 RB IDC 2.5cm lymphnode neg 5% erp.
Sept 09 LB IDC 2.5 & .08 cm lymphnode neg tnbc
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Lorene
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Joined: Jul 10 2010
Location: Alabama
Status: Offline
Points: 211
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Posted: Sep 08 2010 at 12:02am |
Praying a long and healthy life for you, Swisscheeze!!!!!
Lorene
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dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018
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swisscheeze
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Joined: Aug 20 2010
Location: Canada
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Points: 19
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Posted: Sep 08 2010 at 5:35am |
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Thanks Lorene !
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May 07 RB IDC 2.5cm lymphnode neg 5% erp.
Sept 09 LB IDC 2.5 & .08 cm lymphnode neg tnbc
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jody
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Joined: Nov 04 2008
Location: La Verne, California
Status: Offline
Points: 105
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Posted: Sep 09 2010 at 2:57am |
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Hi All! I am a Realtor and I have a client who is 10 years out from TNBC~~ I hug her every time I see her because It is SO exciting to have her in my life!!! She is involved in some sort of study for long term TNBC survivors...she ROCKS!!! Yes survivors are out there. I believe that SO MANY survivors just don't even realize this sight is out here as they are not FRANTICALLY looking for information about this illness like most of us have~! My three year aniversary is creeping up...okay, it's in April....but hey thats only 7 months...right! My 3 year anniversary will coinside with my 50th birthday..can anyone say PARTY!!! Hopefully I will have TWO things to celebrate!!! <3
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diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08 La Verne, California
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zoomommy2
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Joined: Sep 26 2009
Location: Denver, CO
Status: Offline
Points: 1356
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Posted: Sep 09 2010 at 9:22am |
Jody,
Wow, 10 years for your client! May we all have a 10 yr anniversary to celebrate and more! Seven months will go by in a flash for your anniversary!
Lee in Denver
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dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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staceydooley
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Joined: May 05 2010
Location: Burbank CA
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Points: 52
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Posted: Sep 09 2010 at 10:55am |
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Wow. I haven't been on the board for awhile and have been feeling real blue. My chemo ends next thurs and I just found 2 new lumps under my armpit....., so.........,reading your post this morning gives me hope. Thank you for taking the time to post your a 6 year survivor. I need to hear that. and I think other ladies do as well. God Bless
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http://www.youtube.com/watch?v=0Nvx7vFE2fs
Stacey, 43 years, TNBC
Double mastectomy 04-01-10
BRCA 1, porto cath put in
no nodes
chemo to start June 3rd
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