Finally, it came to me...What we need here is...
Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Support Groups
Forum Description: Support Groups
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=5425
Printed Date: Mar 26 2026 at 11:30pm
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Topic: Finally, it came to me...What we need here is...
Posted By: scared
Subject: Finally, it came to me...What we need here is...
Date Posted: Dec 26 2009 at 3:32pm
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Hello, It came to me what this site or it's users could REALLY use, and I have been here for awhile but today it hit me as to what that is and it is... A live chat window where we could all talk to one another in real time. So we would all be logged in as usual and on the side bar would be a list of those that are available for discussion. We could then just listen if we want to or add a comment if we are so moved to. I know there are some times I have been on here just dying to actually have other members to say hello and make some real friendships. Sure, this site is nice as it is but this would be the NEXT step. If you agree please let them know, if you think the idea sucks, that is ok too but I just want to know if it is a good idea or not. Thanks, Dave ------------- Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation. |
Replies:
Posted By: Kellyless
Date Posted: Dec 26 2009 at 5:24pm
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I'm down with that. I work from home, I'm on the computer at least 8 hours a day - I'd participate! ------------- 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: 123Donna
Date Posted: Dec 26 2009 at 6:21pm
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Dave, Sounds like a good idea to me. 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: scared
Date Posted: Dec 26 2009 at 6:26pm
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So, what would the next step be to make this a reality? ------------- Wife diagnosed 7/08 stage 2B 4.78cm with 3 nodes. 15 weeks of Adriamycin and Cytoxin, Mastectomy, 12 weeks of Taxol, and 6.5 weeks of radiation. |
Posted By: 123Donna
Date Posted: Dec 26 2009 at 6:59pm
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Dave, You'd probably have to contact ArleneB, the forum administrator, to see if they could modify the website. We've tried to get the Alternative Support forum to allow different topics to post, but haven't been successful. Right now its just one big thread. Who knows, they may like this idea and ask the website people to make it happen. I don't know what's involved to make the online chat a possibility. ------------- 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: unklez
Date Posted: Dec 26 2009 at 7:41pm
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I'd not hold my breath for this chat feature :-) ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: mom&grandma
Date Posted: Dec 26 2009 at 7:41pm
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Great Idea!
Bonnie ------------- Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2- |
Posted By: 123Donna
Date Posted: Dec 26 2009 at 8:03pm
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Unklez, You're probably right. ------------- 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: Carol (Tenn)
Date Posted: Dec 26 2009 at 10:24pm
Yep, I think Unklez is right. I asked Arlene for Spiritual Support forum and haven't heard a word...at least I think I did...I've slept since then... ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: unklez
Date Posted: Dec 26 2009 at 11:03pm
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On breastcancer.org a new forum for the proposed mammo guidelines was created in a day. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: kirby
Date Posted: Dec 27 2009 at 12:40am
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I was part of the FPP forum for the book I Am Not My Breastcancer. Quite a few from that site [ including autumm and Caryn from this site] have done a Monday night chat for years. It takes place on a seperate site, Chatzy, which is very limiting. It is great to hop onto Monday chat when available. It would be nice to have a chat set up within this site because of the differences in people coming and going. FPP was a closed site open with a different purpose but still cancer related.
Great suggestion Dave. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: MaryinSarasota
Date Posted: Dec 27 2009 at 9:22am
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Maybe in the meantime you could put your Yahoo IM or Messenger name on your stats (create a new account especially for here.) Just a suggestion. I hate it when I type before thinking. Please disregard the above. We should keep the chat here where it belongs. ------------- 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: Carol (Tenn)
Date Posted: Dec 27 2009 at 9:28am
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We don't want to any way diminish this site after TNBC has worked so hard to give us this forum.
Just thinkin' ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: unklez
Date Posted: Dec 27 2009 at 12:04pm
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Dear Carol, I think there is a lot of good in this website and I hate to be skittish during the holidays but creation of this forum or a new sub-forum is hardly difficult these days with all the web tools available. The TNBC Foundation organizers seem to have some philosophical concerns with creating a proper forum for complimentary and alternate discussions. Oh well, we could always just add threads in the Support Forum. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: TNBC_in_NS
Date Posted: Dec 27 2009 at 12:10pm
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I agree with Carol. We need to keep a chat space here in TNBC site!
We would benefit from a chat site though!!!
Admins please put your heads together to make this happen!!! yeah!!!
Helen in Nova Scotia ------------- Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear |
Posted By: Carol (Tenn)
Date Posted: Dec 27 2009 at 3:35pm
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Dear Unklez,
Which is what we are doing...adding new threads....
Maybe they just have other, what they think, are more important things to do....We'll see.
Love Ya,
Carol ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: unklez
Date Posted: Dec 28 2009 at 12:39am
Yea we will see. Love ya too. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Carol (Tenn) wrote:Posted By: Lillie
Date Posted: Jan 05 2010 at 2:26pm
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Does this mean that I would have to comb my hair and have my make-up on? Just kidding.......
I know one thing, I am a true Southerner, and it comes through loud and clear in my voice. When I worked a public job I had phone contact with people from all over the world. I kidd you not, people would call just to hear me talk. If we do this, I might just listen..... I love you guys, 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: Debris
Date Posted: Jul 19 2010 at 1:34pm
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It seems this discussion did indeed lead to a "Chat Room" - but I've yet to see anyone chatting? I've tried to go in a couple of times, but I already talk to myself, so there's no point in online chatting to myself too...
SO, do folks actually use the chat room, and if so, when and how?
Talk to you soon!?? ------------- 4/12 Xeloda/Tykerb 2 Carboplatin 12/11 Dx IA 9 Gemzar/Taxotere Dx IBC:FEC 5 Ixempra/Sprycel 2 25 Rad 10/10 BRCA1-/2suv 9 NED 6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin 06/08 Dx DCIS 0/SN Rads/AIs |
Posted By: Galina2
Date Posted: Nov 02 2010 at 9:20pm
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Hello, scarred,
I came back after a long time, just brosing.
How are you doing? How's your wife doing?
We just go through the journey and do not think about our loved one. I just have learned, both my kids started smoking, when I was going through chemo....
I hope you are doing well.... live chat can be done on SKYPE. See you there. ------------- Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08 |
Posted By: dmwolf
Date Posted: Nov 02 2010 at 10:05pm
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Hi, Galina. How are you? It has been a while! love, d ------------- 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: vickyann
Date Posted: Nov 16 2010 at 10:39pm
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Dave,
No one wants to take away from this site, however i think your idea is wonderful. I have had a bad bad day..I want to scream, instead i have waited for all to go to bed so i could cry and cry.. I would give anything right now to have live support.....
 I have found coming to this site makes me feel better and not feel sorry for myself. I am so alone right now with no support. I know everyone here has felt this....so tomorrow is another day..but right now..it sucks!
Komen sites also have facebook so maybe it would work....
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: 123Donna
Date Posted: Nov 17 2010 at 7:35am
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Vickyann, You OK? Do you want to talk? PM me. Are you on FB? 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: beck
Date Posted: Feb 05 2013 at 12:37pm
| I PUSH CHAT AND THERE IS NEVER ANYONE ON THERE , AM I DOING SOMETHING WRONG BECK |
Posted By: mainsailset
Date Posted: Feb 05 2013 at 12:52pm
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We got the chat a couple of years ago and people used it for a bit but it seems to have drifted onto the backburner. Probably a good idea you brought it up, as we really should start using it more! ------------- 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: beck
Date Posted: Feb 05 2013 at 1:39pm
| WHEN I GET ON THE CHAT IT SAYS BECK HAS ENTERD CHAT ROOM THEN BELOW IT IT SAYS IVE LEFT , WHEN IM STILL ON IT DOES IT EVERY TIME , I THINK IT IS A GREAT FEATURE |