"Understanding TNBC" Brochure Update
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Topic: "Understanding TNBC" Brochure Update
Posted By: tnbcexecdirect
Subject: "Understanding TNBC" Brochure Update
Date Posted: 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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Replies:
Posted By: MaryinSarasota
Date 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 ------------- 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 |
Posted By: tnbcexecdirect
Date 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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Posted By: Nancy
Date 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 ------------- 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 |
Posted By: MaryinSarasota
Date 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 ------------- 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 |
Posted By: tnbcexecdirect
Date Posted: Sep 23 2009 at 10:47am
| 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. |
Posted By: 123Donna
Date 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 ------------- 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: TexasGal
Date 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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Posted By: trip2
Date 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! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: LRM216
Date Posted: Sep 23 2009 at 3:21pm
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I am pm'ing right now. Thank you, this will be invaluable.
Linda ------------- 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 |
Posted By: Cherseybear
Date 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 ------------- 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. |
Posted By: tnbcexecdirect
Date 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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Posted By: thenewme
Date 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!
------------- 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. |
Posted By: trip2
Date 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!! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: girlpower731
Date 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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Posted By: trip2
Date Posted: Sep 25 2009 at 5:54am
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Bump ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Sep 25 2009 at 8:20am
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I know that I will be taking them to GYN offices also.
Nancy ------------- 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 |
Posted By: Lillie
Date 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 ------------- 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: trip2
Date 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. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Luv2sing
Date Posted: Sep 26 2009 at 7:45am
Sending you PM, need a ton of brochures ------------- Raymon 
Rejoice Everday! Dx 1/23/2009, IDC, 3cm, Stage II, Grade 3, 1/7 nodes, ER-/PR-, HER2- , BRCA- |
Posted By: trip2
Date Posted: Sep 26 2009 at 11:06am
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Bump ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Kellyless
Date Posted: Sep 26 2009 at 11:34am
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I'd be happy to distrubute in my area - your PM is full so I can't send you info! I'm in Dallas, TX, many places treat breast cancer in my area and I'd love to help get out the info! NOBODY gave me any info specific to my TN disease - especially my 1st surgeon and doctor! Give me a PM back! ------------- IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
Posted By: Cebo
Date Posted: Sep 26 2009 at 11:55am
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I'm in! I will PM you my info.
------------- Sister DX'ed 11/08 Lumpectomy & SN biopsy 12/08 1.1 cm tumor, node neg (0/2) Stage 1 DD A/C x 4, Taxol x 4, completed 4/17/09 33 rads (incl 8 boost), completed 6/22/09 |
Posted By: Cebo
Date Posted: Sep 26 2009 at 12:06pm
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Tried to e-mail you but your PM is still full
------------- Sister DX'ed 11/08 Lumpectomy & SN biopsy 12/08 1.1 cm tumor, node neg (0/2) Stage 1 DD A/C x 4, Taxol x 4, completed 4/17/09 33 rads (incl 8 boost), completed 6/22/09 |
Posted By: trip2
Date Posted: Sep 26 2009 at 2:44pm
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She has been busy but hopefully over the week-end she will clear her PM box. Keep trying ladies. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Barb-42
Date Posted: Sep 26 2009 at 6:26pm
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I would be glad to help getting the brochure's passed out.
I will take some to the b/c center where I go to and also to the support group and local surgeon's that do breast surgeries. I will even take some to near by cities. I will pm you with my information. Thanks. Take Care, Barb ------------- dx-1/2/08 @ 42 yrs.old lumpectomy w/close margins/ 1/14/08- no nodes/stage 1/gr.3 1.5 CM IDC chemo-AC-3 Dose Dense Taxol wkly 12- 2/21/08-7/17/08 Rads-33 w/8 boosts 8/6/08-9/22/08 BRCA 1/2 Neg. |
Posted By: Suzanne
Date Posted: Sep 27 2009 at 11:44am
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I think you all will be thrilled with the brochure, if it turns out anything like the rough draft. Natalia (a young Hispanic mother/lawyer from Miami, Florida), Raymon (Luv2Sing, a Black woman from Virginia), Lori (Nancy's daughter from Pennsylvania), Cheryl (Cheryl51, a psychotherapist in the San Francisco Bay Area), our very own Pam (trip2 from Oklahoma), and I (a teacher who lives east of Napa) made up the consumer advisory committee for the pamphlet.
Allison, please let us know when you empty your mailbox so we can pm our addresses. I'm sure many of us would love to distribute the booklets.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Nancy
Date Posted: Sep 27 2009 at 1:13pm
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I just sent Allison an email to tell her.
Nancy ------------- 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 |
Posted By: trip2
Date Posted: Sep 27 2009 at 1:17pm
Suzanne, forgot a name, I also participated as the rest of you. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Suzanne
Date Posted: Sep 27 2009 at 1:58pm
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Pam, I had you down on my list but somehow didn't get you typed in. I'm SO sorry! I'm going to correct that right now.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Barb-42
Date Posted: Sep 27 2009 at 4:47pm
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I have tried for the second time to send my information.
I will try again tomorrow. Take Care, Barb ------------- dx-1/2/08 @ 42 yrs.old lumpectomy w/close margins/ 1/14/08- no nodes/stage 1/gr.3 1.5 CM IDC chemo-AC-3 Dose Dense Taxol wkly 12- 2/21/08-7/17/08 Rads-33 w/8 boosts 8/6/08-9/22/08 BRCA 1/2 Neg. |
Posted By: tnbcexecdirect
Date Posted: Sep 27 2009 at 5:24pm
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Soooo Sorry!! It is a holiday for me, so I have been a little distracted. There is room in my pm box now. Thank you to all of you that have volunteered to help distribute the brochure. I am so excited to get it out there! If you tried me before and couldnt get through, please try again.
Best,
Allison
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Posted By: Nancy
Date Posted: Sep 29 2009 at 11:26am
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Bump
Nancy ------------- 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 |
Posted By: Nancy
Date Posted: Oct 07 2009 at 6:32am
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Bump
Nancy ------------- 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 |
Posted By: Nancy
Date Posted: Oct 14 2009 at 7:47am
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bumping this forward for Juliette and any one else who may not have seen this.
Nancy ------------- 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 |
Posted By: kidzrn
Date Posted: Oct 14 2009 at 10:18am
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Can't wait to see it and spread it around!!!!!!!!!!!!! christi
------------- christi 2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, then Avastin every 3 wks until 2012...NED since 2/09 |