"Understanding TNBC" Brochure Update |
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tnbcexecdirect 
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Joined: May 31 2007 Location: United States Status: Offline Points: 25 |
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 Topic: "Understanding TNBC" Brochure UpdatePosted: Sep 23 2009 at 9:29am |
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Hi Everyone,
As many of our forum members may remember, earlier this year the foundation teamed up with Living Beyond Breast Cancer to product a "Guide to Understanding TNBC" aimed at the newly diagnosed. Many of our forum members where very instrumental in getting this accomplished. I am now happy to report that the guide is almost complete. It will be ready for distribution in November. I am also thrilled to report that I have seen the brochure and it is a very significant resource. It is VERY well done. Now our goal is to get it to as many breast oncologist/hospitals as possible so that women with TNBC can find it and benefit. That is where you all come in. We are hoping to get a few volunteers to help us distribute the guides for display in doctors offices and hospitals that treat women with TNBC all over the country. If you are interested, please pm me with your name, address and how many brochures you would like for us to send you. We will give this list to LBBC and they will send you the brochures as soon as they are ready to ship. This is a really good way to help women that are newly diagnosed and that have yet to be diagnosed find information, support, answers and our TNBC commuinty.
All my best,
Allison
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MaryinSarasota
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Joined: Nov 08 2008 Location: Sarasota Status: Offline Points: 362 |
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Posted: Sep 23 2009 at 9:44am |
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Allison,
Can we see the brochure before we commit? I am anxious to see the end result. Mary |
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53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells |
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tnbcexecdirect
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Posted: Sep 23 2009 at 10:06am |
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Hi Mary,
The brochure is not finalized. Although the text is complete, they are still working on the layout and graphics. I am not at liberty to share the working draft that I have. If you want to wait to see it and then let me know, I can see if we can send you some after the fact. I think everyone will be really pleased with the results.
Best,
Allison
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Sep 23 2009 at 10:18am |
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Allison,
I know that Lori and I will be happy to distribute them, so I will send you a pm.
Nancy, Lori's mom
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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MaryinSarasota
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Posted: Sep 23 2009 at 10:28am |
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Thank you for your efforts in this. It is very much appreciated to us who have been there.
Mary |
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53 @ Dx 5/08 Stage 1, grade 3, IDC 1.6 cm, 0 nodes, TNBC, lumpectomy, chemo TAC-6, radiation-34 12/18/08
NED-10/09, PBM w/TE recon. 7/10, removal of TE/infec 8/10. CT chest. Rec fat-graft & stem cells |
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tnbcexecdirect
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Posted: Sep 23 2009 at 10:47am |
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You are very welcome. It would have been so comforting to have a resource like this when Nancy was diagnosed. I am so excited to have this out there for others.
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123Donna
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Joined: Aug 24 2009 Location: St. Louis, MO Status: Offline Points: 13510 |
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Posted: Sep 23 2009 at 10:53am |
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I'd be happy to distribute the brochures in my area. I'll send you a pm.
Donna Edited by 123Donna - Sep 23 2009 at 11:23am |
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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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TexasGal
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Joined: Sep 07 2009 Status: Offline Points: 49 |
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Posted: Sep 23 2009 at 11:05am |
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I would very much be interested in helping. Oddly enough, I go to MDAnderson and noone ever offered me any such literature. I had to learn about TNBC via the internet. Wondering if perhaps they don't like to put more fear in us? Needless to say, I feel that people should be informed.
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trip2
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Posted: Sep 23 2009 at 11:27am |
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I will be PMing, this is exciting.
How thrilling to be able to help spread information around the Country.
Thanks Allison!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Sep 23 2009 at 3:21pm |
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I am pm'ing right now. Thank you, this will be invaluable.
Linda
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
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Cherseybear
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Posted: Sep 24 2009 at 3:31am |
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I would definitely be interested in distributing the brochures. I live in Toronto, Canada...........would you still consider sending me some? It would be great to have a sample to show to my surgeon (local hospital) and my oncology team (large downtown teaching hospital) before you send me a whole lot. What do you think? I wish I had something to read upon my diagnosis instead of coming home and getting on the internet............scary stuff!!
Cheryl
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Dx. 03/07/08 - Masectomy & node dissection 22/07/08. IDC, 8/14 positive nodes, Grade 3/Stage 3C. Tx - 4DD AC then 4DD Taxol. Avastin - Beatrice Study. 30 Rads. Liver Mets - November '09.
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tnbcexecdirect
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Posted: Sep 24 2009 at 6:26am |
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Thank you for the great response. So far we have 7 volunteers. But I think we can do better. It would be great to eventually get these in every big BC center around the country. If you are interested, please pm me with your address and dont forget to tell me how many you want.
Thank you to all that have volunteered already!!!!!
Best,
Allison
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thenewme
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Posted: Sep 24 2009 at 9:08am |
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Absolutely!!! What an awesome resource this could be!!! Is there any plan in place for a mail campaign to breast cancer centers, oncology offices, hospitals, etc? Is there a downloadable version on the internet that we can share? Thanks so much for putting this together! I'm honored to take part in spreading the word!
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DX: IDC/TNBC 11/08 5-cm Stage IIb Grade 3. Age 39. Double Mast 12/08 (prophy right) with tissue expanders . ACx4-Tx3. Suspicious IM node. 25 Rads. BRCA NEG.
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trip2
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Posted: Sep 24 2009 at 11:58am |
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Come on members,
We have way over 2,000 of you, help those being diagnosed with TNBC!!
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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girlpower731
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Posted: Sep 24 2009 at 3:28pm |
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I'll join in. I'll share the brochures with two cancer centers and I'll give some to my breast cancer support group.
Girlpower
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trip2
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Posted: Sep 25 2009 at 5:54am |
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Bump
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Sep 25 2009 at 8:20am |
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I know that I will be taking them to GYN offices also.
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Lillie
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Joined: Jul 10 2009 Location: Eastern NC Status: Offline Points: 3616 |
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Posted: Sep 25 2009 at 11:41am |
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I am "tickled pink" that I will be able to get brochures to share with other trip negative sisters.
I spoke with my oncologist this morning about the brochures. I didn't want to place information in a public place without permission. He sounded very happy and agreeable for the information to be shared through the oncology clinic, as well as four other locations that the clinic has here in Eastern North Carolina. I'm on board. Love in Christ, Lillie |
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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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trip2
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Posted: Sep 25 2009 at 12:25pm |
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That is wonderful Lillie.
Good to hear your Onc is on board. Think about it, this is the first of it's kind on TNBC, should be received by all happily if they are worth their salt.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Luv2sing
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Joined: Feb 19 2009 Location: United States Status: Offline Points: 108 |
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Posted: Sep 26 2009 at 7:45am |
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Sending you PM, need a ton of brochures
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Raymon
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
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