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Quote Request- How has TNBC Foundation helped you?

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Category: TNBC Forums
Forum Name: TNBC Talk
Forum Description: A place to chat
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=11767
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Topic: Quote Request- How has TNBC Foundation helped you?
Posted By: arleneb
Subject: Quote Request- How has TNBC Foundation helped you?
Date 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



Replies:
Posted By: arleneb
Date Posted: Feb 06 2014 at 10:17am
We just need a few quotes if you could please take a moment to help.

- Arlene


Posted By: rosered71169
Date Posted: Feb 06 2014 at 12:16pm
Originally posted by ArleneB ArleneB wrote:

We just need a few quotes if you could please take a moment to help.

- Arlene
 
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


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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


Posted By: arleneb
Date Posted: Feb 06 2014 at 12:49pm
Thanks Susan!


Posted By: 123Donna
Date 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



Posted By: arleneb
Date 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!


Posted By: Lillie
Date 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


Posted By: mainsailset
Date 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


Posted By: LottaLenya
Date 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.


Posted By: sabinecalifornia
Date 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


Posted By: MLindaG
Date 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.


Posted By: weekender09
Date 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 :)


Posted By: Natalie
Date 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


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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


Posted By: Annie
Date 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


Posted By: dawncoskren
Date 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


Posted By: nancykind
Date 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.


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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!


Posted By: krisa
Date 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.


Posted By: btstark2003
Date 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


Posted By: Melissa P.
Date 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    Thumbs Up


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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


Posted By: kirby
Date 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.

-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Donna7
Date Posted: Feb 22 2014 at 9:02am
Triple-stars for the TNBC Foundation website and forum!!  It's been an invaluable resource for me during this unwanted journey.  The forum has been absolutely incredible. I really don't know what I would be doing without it - and these amazing warrior women I have had the pleasure in "e-meeting."  The website is also filled with insightful tools and patient-friendly.  I am also grateful for the suggested questions to ask all of your doctors - they have been enlightening, educational and much-needed.

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DX 9/26/13 IDC TNBC; Grade 3 tumor; Stage 1; tumor deep, about 2.3 cms; surgery post chemo


Posted By: nonna1642
Date Posted: Feb 27 2014 at 3:32pm
The TNBC Foundation helped me in 2010 when I was diagnosed with it & the valuable information & support I received helped me immensely. Thank you for all your support.

Nonna

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Dx: age 70 IDC TNBC Grade 3 5/10 left mastectomy Stage IIB 5.1 cm no reconstruction followed by chemo of Taxotore & Cytoxin then radiation


Posted By: CiGi
Date Posted: Mar 03 2014 at 1:20pm
When I first went to the doctor and received the dx of TNBC, I was so scared and drove home crying.  Everything that made me happy also made me sad.  I felt that I couldn't talk to anyone about what I was going through because they wouldn't understand so I told very few people I had it.  But being so scared with no one to talk to, I found this site and everyone's insight and comforting posts made accepting my cancer much easier.  Everyone's support made me a much stronger person with the will to fight.
 
Carol, New Jersey 


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Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010.


Posted By: Kerin
Date Posted: Mar 05 2014 at 6:49pm
TNBC Foundation was a great POSITIVE resource for me, family history of hormone positive cancer, didn't know anything about TNBC.


Posted By: susann
Date Posted: Mar 25 2014 at 3:00pm
An invaluable source of information, comfort, friendship and advice.
Susan, dx July 2009 London

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DOB 09.11.51Dx July09,TNBC,GR3,IDC Nodes removed & clear,R.Mst,Chemo. Rads April 10 dx bone mets wrongly in spine for 2 months. BRCA1. LBreast removed + ovaries in 2012


Posted By: dmwolf
Date Posted: Mar 25 2014 at 6:46pm
TNBCF has been a great source of community, compassion, and comraderie, as well as a place to give back by being there for others in their time of need.  
Denise, Berkeley


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DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: rubylindy
Date Posted: Jun 06 2014 at 9:19am
TNBC reminds me I am not alone.... even though feeling far away.  And that I have friends out there who really do understand where I am at now.   And where I would like to be in the future   NED! 

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BRCA1+, Bilat oopherectomy @ 46.
now 52 Dx: CDI, BilatMastect 3/1/14 1.5cm w/ 3mm met SLN, Nottingham8/9, IIA, Chemo: Genoxal, Fluoracilo, Epirrubicina, TAXOLx8 start 6/25; rad. 6wks, Expanders


Posted By: dayle
Date Posted: May 31 2016 at 10:10am
hi...i found out about this site just after the dx....i can honestly say i still dont understand how dangerous this kind of cancer is....i know its crazy for reacurrances or even for having fatal outcomes so the best we can do is think possitive...say online and talk to the women who are alos fighting this cancer....this type....any way.....this site is great!!! and i will return repeatably  Wink



Posted By: denise07
Date Posted: Jun 14 2016 at 12:11am
This site was the best thing that I found after my dx the support and information was every thing I needed got me through very tough times still does.This site is surely my second family don't know what I would do with out you.
Thank you so very much!
Denise


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DX Idc 10/07,st2,gr3,2/6 lymphnodes


Posted By: MMcKinney
Date Posted: Nov 12 2016 at 7:03am
TNBC foundation is helping me stay motivated.


Posted By: xo_ro
Date Posted: Apr 17 2018 at 7:12am
TNBC was the main forum I would constantly visit to learn about my diagnosis and intended treatment plan.

Rosanna from Guam
Dx: Feb 4, 2017
Diagnosis: TNBC Stage 2B left breast



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