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arleneb
Admin Group
TNBC Foundation Administrator
Joined: Nov 03 2009
Status: Offline
Points: 394
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Topic: Quote Request- How has TNBC Foundation helped you? Posted: Jan 31 2014 at 11:28am |
TNBC Foundation Community, We are in the process of composing an annual report for 2013 and would like to highlight the ways TNBC Foundation has been helpful to patients and families. - Did you find support and/or helpful information on the forum?
- Did you find a clinical trial using our matching service?
- Did you call our helpline and receive support and information?
Please post a one-sentence quote to this thread that we may use for this report which will be available online. Please include your first name, geographical location and dx date(s) if you are comfortable sharing. If you would prefer to email your quote, please send to arlene@tnbcfoundation.org Thank you for your help with this project. Arlene Brothers Manager, Special Projects TNBC Foundation
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arleneb
Admin Group
TNBC Foundation Administrator
Joined: Nov 03 2009
Status: Offline
Points: 394
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Posted: Feb 06 2014 at 10:17am |
We just need a few quotes if you could please take a moment to help.
- Arlene
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rosered71169
Groupie
Joined: Mar 19 2012
Location: Northern Ohio
Status: Offline
Points: 88
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Posted: Feb 06 2014 at 12:16pm |
ArleneB wrote:
We just need a few quotes if you could please take a moment to help.
- Arlene
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Having a "rare aggressive form" of breast cancer, I find the TNBC website forum an invaluable resource. I generally ask my questions about diagnosis, treatment and side effects here first to get feedback from others in similar situations and support from the group. Susan - Northern Ohio - 2/21/12 - IDC with lymph node involvement
Edited by rosered71169 - Feb 06 2014 at 12:17pm
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IDC 2-21-2012 @ age 42 TNBC, Stage IIA, Gr 3, 1.5cm Tumor Rt Breast, 3 Lymph Nodes, Neoadj Chemo, TACx6,BRCA Neg, Bilateral Mastectomy 7-30-12, 28 Rads, Bilateral DIEP 5-22-13...3 Beautiful Daughters
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arleneb
Admin Group
TNBC Foundation Administrator
Joined: Nov 03 2009
Status: Offline
Points: 394
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Posted: Feb 06 2014 at 12:49pm |
Thanks Susan!
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123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
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Posted: Feb 06 2014 at 1:29pm |
Finding the TNBC Forum after diagnosis and in the middle of my treatment was a lifeline! It helped me feel I wasn't alone in this battle. I've learned so much from all the members and information posted. It helped me select two clinical trials and share in the experiences of other members who were also involved in those trials.
Donna - from Missouri, dx in 2009 and 2010
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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15
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arleneb
Admin Group
TNBC Foundation Administrator
Joined: Nov 03 2009
Status: Offline
Points: 394
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Posted: Feb 06 2014 at 1:38pm |
Thank you for the quote Donna...and for helping us stay on top of SPAM and Advertisements on the Forum!
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Lillie
Senior Member
Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3616
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Posted: Feb 06 2014 at 2:13pm |
I found this site 3 years after my treatments ended. The wonderful support here helped me to reach my 7th year NED with much less stress. It also offers me a wonderful opportunity to help Support other triple negative sisters.
Lillian - from North Carolina, dx 6/9/2006
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Dx 6/06 age 65,IDC-TNBC Stage IIb,Gr3,2cm,BRCA- 6/06 L/Mast/w/SNB,1of3 Nodes+ 6/06 Axl. 9 nodes- 8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4 No Rads. No RECON - 11/2018-12 yrs NED
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mainsailset
Senior Member
Joined: Jul 27 2008
Location: Washington State
Status: Offline
Points: 5004
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Posted: Feb 06 2014 at 2:24pm |
Being diagnosed with Tneg is a moment where your whole world turns upside down and your close circle of lifelong friends and family struggle to find words and hugs of support.
Not so the Tneg family. Despite having an intimate knowledge of the fear that chases us all, the members here never miss a beat in helping one another in ways that are remarkable and humbling. There is courage here and on the days where my own courage falters I always know someone here will pick me up, dust off my sorry behind and set me on my path once again.
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dx 7/08 TN 14x6.5x5.5 cm tumor
3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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LottaLenya
Newbie
Joined: Jan 10 2014
Location: NJ
Status: Offline
Points: 6
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Posted: Feb 06 2014 at 3:55pm |
I found this website when I was diagnosed TNBC last May. It provides valuable information that enables me to be proactively involved in my treatment decisions.
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Diagnosed 4/2013. 2A, grade 3, no nodes, BRCA-. Lumpectomy LB 5/2013, 2.5 cm. ACT followed by RADS. Completed treatment.
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sabinecalifornia
Senior Member
Joined: Aug 31 2011
Location: Corona, CA
Status: Offline
Points: 152
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Posted: Feb 06 2014 at 3:56pm |
The TNBD Foundation is my second family. When I was diagnosed with TNBC I felt like falling in a black hole. But then I discovered the TNBC Foundation and after reading all the post I found support, love and knowledge. If I had a question everybody was right there for me. Couldn't have done it without you all.
Thank you Sabine
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DX TNBC 7/11 @ age 50, Stage 2A Grade 3, 1/19, LE/AD 8/11, BRCA1/2 neg., 4 A/C, 10 Taxol, 2 Abraxane due to allerg. react. to Taxol, fin 3/12. 33 Rads 6/12. NED CT 8/12, 10/13, 10/14
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MLindaG
Senior Member
Joined: Feb 16 2013
Location: Pittsburgh PA
Status: Offline
Points: 380
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Posted: Feb 06 2014 at 7:44pm |
When I was diagnosed my onc and surgeon really didn't say much other than "this is an aggressive type of cancer". Finding this site was one of my blessings. I got to understand in a straight forward manner what TNBC is and how we need to be warriors to fight this beast. Having others who understand what you are going through is invaluable. I will be forever grateful for the information, advice, support and fellowship.
Linda Pittsburgh PA 6/10/12 Stage 3 3.5 cm lump 3/10 lymph nodes chest wall lymph
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Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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weekender09
Senior Member
Joined: Mar 29 2013
Location: United States
Status: Offline
Points: 135
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Posted: Feb 06 2014 at 9:15pm |
TNBC Foundation is the only place that addressed the needs of my cancer with hope, honesty, and sincerity, offering me a place to take care of me and my concerns without worrying my friends and family. Now this community is family to me.
Barb, Woodbury, MN 02/12/2013
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02/12/13 DX TNBC, Grade III, Stage 3, 3.3cm tumor, IMN and 1 lymph Positive, Chemo A/C T complete 6/13 BRCA1-/BRCA2+ Variance, BIL 7/13, 33 RADS complete 10/13 Remssion :)
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Natalie
Senior Member
Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 473
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Posted: Feb 07 2014 at 9:53am |
The TNBC Foundation gave me the strength and insight to deal with my diagnosis. In this community the shoulders are strong for everyones worries and tears. I never felt alone while connected here. Natalie, Bay Shore N.Y. Diagnosed April, 2011
Edited by Natalie - Feb 07 2014 at 12:52pm
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Annie
Senior Member
Joined: Dec 19 2008
Location: Canada
Status: Offline
Points: 887
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Posted: Feb 07 2014 at 10:35am |
The TNBC Foundation was a blessing to me in 2008 when I found it on line. A wonderful caring group of people welcomed me and provided assurance, helpful tips and tremendous support which to this day continues and I consider this family of friends a great great source of strength. A hundred thousand Thank You's!!!
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Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
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dawncoskren
Senior Member
Joined: Jun 19 2013
Location: NH
Status: Offline
Points: 124
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Posted: Feb 07 2014 at 7:45pm |
This site has been so helpful to me. I learned a lot. After being on this site I knew the right questions to ask and to not except anything but the best care.
Here's to good health xoxoxo
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DX 6/14/13 TNBC-IDC 7/15 BRCA 1 Positive 7/16 double mastectomy 7/23 Post surgery Pathology- Stage1,tumor 2cm nodes clr. 8/16/13 4 A/c and 4 Taxol 1/6/14 implants 3/13/14 ovaries and tubes removed
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nancykind
Senior Member
Joined: Mar 15 2012
Location: so adks, nys
Status: Offline
Points: 192
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Posted: Feb 09 2014 at 11:37am |
Not knowing anyone else diagnosed with TNBC, I went looking for information online very quickly. TNBCfoundation.org is a goldmine, to put it simply. I've received knowledge, direction, hope, support and the assistance of my sisters in the same fight as I. I am not alone. I never was.
Edited by nancykind - Feb 09 2014 at 11:37am
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Lg lump never visible on any films but found 9mm. Lump 1/25/12, DX 1/31@50yrs IIIC/TN/DCIS/INV, Margins Unclr, Ki67 40%,Gr2. MX L 2/24. 3.1cm total. 11/17nodes. AC/T 2xWk,33rads. 12/12 MX R. 9/13 NED!
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krisa
Senior Member
Joined: May 21 2008
Location: Portland, OR
Status: Offline
Points: 1090
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Posted: Feb 10 2014 at 4:50pm |
The wealth of information that members shared was invaluable. I could educate my doctors about triple negative breast cancer because of what I read on the TNBC forum.
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btstark2003
Senior Member
Joined: Apr 24 2010
Location: St. Louis area
Status: Offline
Points: 426
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Posted: Feb 15 2014 at 4:25pm |
The Forum on the TNBC foundation website has connected me with so many knowledgable survivors. It's made a real difference in my treatment and my management of side effects to get the input from all these women, and it has also given me an opportunity to help others. The ability to share with people who are going through the same thing makes it so much easier. The positivity and faith and prayers of so many who post on this site helps to keep me optimistic and reminds me to live each day to the fullest.
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2008 Stg1 TNBC, LX, FEC+T, rads 2010 2.5cm tumor BRCA-, BMX,CMF 2011 LN mets, Gem/Carbo, surgery, rads 2012 lung mets, PI3Ki/taxo 2013 anti-PD-1 2014/15 Xeloda, IMMU-132, eribulin Aug 2015 Keytruda
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Melissa P.
Senior Member
Joined: Jun 10 2012
Location: Toledo, OH USA
Status: Offline
Points: 330
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Posted: Feb 17 2014 at 1:54pm |
"TNBC Foundation has helped me connect with many courageous women whom has walked a similar journey and have personally met and bonded with several survivors in our unique Sisterhood." Melissa, Ohio dx. 2009
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"Hope for more Tomorrows" TNBC dx August 2009, Age 41, Stage 2, 2cm, 0 nodes Lumpectomy/ACx4,Taxolx4/33rads Triple Negative Breast Cancer, "I Won't Back Down!" mlsspaskvan.blogspot.com
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kirby
Senior Member
Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1088
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Posted: Feb 17 2014 at 4:15pm |
I found this forum almost a year after it started and 5 years after my diagnosis. It was great to have a better understanding of my particular cancer, with others in the same boat. It was nice to be able to give hope and give back to those newly dx.
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kirby
dx Feb. 2001. Age 44 Lumpectomy
2cm. no nodes stage 1 grade 3
4 rnds AC, 35 rads
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