Any one heard of this Colontown site ?

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Nickmark59
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Any one heard of this Colontown site ?

Postby Nickmark59 » Mon Mar 12, 2012 5:39 pm

http://www.nxtbook.com/ygsreprints/NEMA ... mar12/#/16

Was reading my NEMA national electrical Manufacturers magazine and came upon this thumb thru it several good articles on imaging services this month
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

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eitter
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Re: Any one heard of this Colontown site ?

Postby eitter » Mon Mar 12, 2012 5:46 pm

Nickmark59 wrote:http://www.nxtbook.com/ygsreprints/NEMA/g24391_nema_ei_mar12/#/16

Was reading my NEMA national electrical Manufacturers magazine and came upon this thumb thru it several good articles on imaging services this month


LOL....it is not a site it is a Private vs Public group on Facebook. Erica Hansen started it and she was at the Call on Congress final dinner. The website is not active yet, in fact I was sent a test copy of it a few weeks ago and they plan on having a forum just like this.

I did not go to the article you referenced. But ColonTown is another ColoRectal Awareness and support group.
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

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Nickmark59
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Re: Any one heard of this Colontown site ?

Postby Nickmark59 » Mon Mar 12, 2012 5:55 pm

The more the merrier situation? :roll:
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

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Candyys03
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Re: Any one heard of this Colontown site ?

Postby Candyys03 » Mon Mar 12, 2012 6:09 pm

I have never heard of it.
Thanks for the info Liz.
Candy
DX8/0642yrIVCCmtsliver
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07oxy
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08iri+erb
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eitter
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Re: Any one heard of this Colontown site ?

Postby eitter » Mon Mar 12, 2012 6:14 pm

Nickmark59 wrote:The more the merrier situation? :roll:


Actually it is a buyer beware situation, and not against Colontown, but ColoRectal Awareness groups are popping up all over and it is starting to get a bit confusing! I had once wanted to start a 501C3 and was talked out of it, not to say I wont in the future for other reasons. But all this to say just be careful where you give your money and be sure you know what the focus is of the group and so many of the groups sound alike and you may think you are giving to one when it was really another one you were interested in.
Blessings,
Liz DENNIS
Tempe,AZ
DX 05/06 Rectal
6 Weeks radiation with 5FU
LAR 10/06 Stage III
Temp Ileo, reversal failed in 05/07 after 1m in hospital came out with a permanent colostomy
http://www.runlizrun.com

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Bill5107
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Re: Any one heard of this Colontown site ?

Postby Bill5107 » Mon Mar 12, 2012 7:10 pm

I'll say this about ColonTown and Erika. I was invited very early to a list the preceded the Facebook "secret group". It didn't hide email addresses, and she seemed oblivious to the concept, so I demonstrated it to her, but that was set aside when she moved on to Facebook. I was invited early on to it and I'll heartily second what Liz said about "buyer beware". That's a perfect and very neutral way to say it.

I cannot leave it at that myself, however.

I often ask myself, of ColonTown or indeed any other group, "there is this claim or that claim that this group purports to support or be affiliated with. Where is the evidence?"

I'll say that 99.2% of the folks there I will say are well worth visiting with for one reason or another. Having said that, I was removed and banned from the group unilaterally by Erika, no other admin was involved. I was removed over on-topic replies to topics about repeat comments made from time to time primarily by Erika that left me embarrassed that I'd invited ANY ColonClub members to the group. I tried to address them gently in private, but she kept taking it to public threads and I was getting messages from other members who were like minded "but didn't have the energy to write what they really thought", as they were offended to the point of expletives in at least one case. . . (Molly and Colondar rules were misrepresented repeatedly despite all my attempts to gently correct over time, and it was giving ColonTown an agist reputation)

Within minutes of her first contact with me that she felt I was "stirring up trouble" I lost contact with the about 350+ members there. Folks started asking where I was and why I don't post anymore, so I eventually decided to make another secret group, "CRACS", to be owned and run by the members, no dictators allowed, and no money-making intentions, just a friendly group where we can hang out. There are many others, unfortunately the one I would want to point out I can't directly share, but look for "F**k cancer", you might find some familiar names behind some of those groups :-p CRACS at least explicitly targets Colon Rectal and Anal Cancer Support, if I might plug my own creation that I share fully with everyone who might be interested :-p

I will say of the ideas Erika has had for ColonTown, I haven't seen progress on any of them, but then again, I've been out of the group so things may have changed. The ideas historically seem to duplicate rather than fill a gap, unify or augment any other efforts, and she sincerely doesn't seem to understand the negative impact of trash-talking/misinforming folks of other groups and people's intentions. That was my last straw. I will not be silent in the face of denigrating other worthy groups in any way shape or form.

I'm sorry if folks feel I speak to harshly or judgmentally of CT or Erika, but she made her bed in this respect. I feel I've accurately represented my view of her and previously I have invited her to join in here, so she is of course welcome to join and respond to my comments, unlike the comments she has made in her secret group about ColonClub's founder and the Colondar rules and those who organize and run it. My challenge here I feel is a natural consequence of her not involving other folks as I requested for an amicable resolution to our conflict.

Peace everyone
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

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Jimswife
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Re: Any one heard of this Colontown site ?

Postby Jimswife » Mon Mar 12, 2012 7:21 pm

Hey bill i wondered why I never saw you at Colontown lately , I didn't know you had left / been removed ?? Hey thanks for my fb ask me why I'm blue picture , I finally worked out how to get it as my profile pic . Still couldn't do it from my iPhone though ? People do keep asking me what's that blue sticker on your profile pic so it's definatly working lol x
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

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Bill5107
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Re: Any one heard of this Colontown site ?

Postby Bill5107 » Mon Mar 12, 2012 7:29 pm

Jimswife wrote:Hey bill i wondered why I never saw you at Colontown lately , I didn't know you had left / been removed ?? Hey thanks for my fb ask me why I'm blue picture , I finally worked out how to get it as my profile pic . Still couldn't do it from my iPhone though ? People do keep asking me what's that blue sticker on your profile pic so it's definatly working lol x

You are more than welcome! Message me and I can give you one that is formatted for ColonClub too. . . and anyone you know who wants one, just have them message me, I can message them back a logo'd up image. It's super easy to do.

Ah well. . . I still don't like FaceBook in general, but so many friends and family are already there, that I have to admit to being somewhat addicted :-p And it naturally fuels a break from Cancer topics too. Which I've been in need of lately. I see so many topics here I usually would have clicked but I just don't have the heart to right now, so I'm quite a bit more selective. . . unfair as it might feel.
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

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Jimswife
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Re: Any one heard of this Colontown site ?

Postby Jimswife » Mon Mar 12, 2012 7:42 pm

That's another thing I still never figured out out to get my picture on here ? I once tried from the desktop pc and it kept saying something about picture dimensions too big or too small or something ? I don't Mind Facebook , Im like you not wanting to think about cancer 24/7 , if I can ignore it for a bit then great , I've done enough worrying myself into the ground over the past 6 months I need to be strong now for my husband and my young son , I was making myself ill and depressed I was no help to anyone , don't get me wrong I still worry about the unknown but I know I have no control over what may or may not happen so try my hardest not to worry , it dosent get you anywhere .
Victoria , Wife to Jim age 43 dx oct 2011
Stage 3 cc with 2 out of 21 positive lymph nodes
Folfox starts nov 11-may 12
All scans and bloods since surgery confirm no evidence of disease
Hoping to stay ned forever .... Fingers crossed !!!!!!!

AJS
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Location: Virginia

Re: Any one heard of this Colontown site ?

Postby AJS » Mon Mar 12, 2012 11:49 pm

Hey Bill......I had often wondered too what had happened to you on colontown as well. Did not have any idea that you had been banned. I haven't posted on there in a long time. I didn't like the bashing that went on about the colon club either. I still tend to come on here more than I check out colontowns page. I still think this site is way more helpful, supportive and understanding. I agree colontown has a long way to go.

Angie

ps.....I need to send you a pic so you can work your magic for me too. I've been seeing everybody elses on fb that you've done and they all look good!
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin


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