《 The Times They Are a-Changin' 》

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O Stoma Mia
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Location: On vacation. Off-line for now.

《 The Times They Are a-Changin' 》

Postby O Stoma Mia » Sun Jan 14, 2024 6:05 pm

Image

According to this 2023 press release, The Colon Club merged with Fight CRC at the end of 2023.

So, by now the new merger should have been implemented, and the various on-line websites should reflect the changes that have taken place.

What do we find if we examine the on-line resources for the two organizations now? Well, here's a brief summary of what I found.

1. Both organizations are currently structured as U.S.-based 501(c)(3) tax-exempt organizations, and both are in good standing right now.

2. In the 2023 press release, FightCRC describes The Colon Club now as a "program" within FightCRC, i.e., something like a division or a department within a larger organization. (You can think of this somewhat like the case where a very large pharmaceutical company buys out a small, successful bio-tech company in order to allow the start-up to continue its work under the same name, same trademark, same patents as before, but without the pressure to constantly seek short-term venture-capital funding to stay afloat.)

3. FightCRC is by far the larger of the two organizations. Its annual gross revenue is roughly 58 times that of The Colon Club, and its declared net worth exceeds $5million, while that of The Colon Club is only $125,000, i.e., around a 40-fold difference. FightCRC's Mission is much, much broader than that of The Colon Club, and its management structure is more extensive: It has a larger set of officers on its management team, and its Board of Directors is over twice the size of the Colon Club's Board.

4. Both organization have their own annual "signature" events, of which they are each very proud. For FightCRC it is the Call on Congress event held every March and which is now in its 18th year. For Colon Club it is the Colon Camp / On-the-Rise event held every summer and which results in the annual "On the Rise" magazine containing biographies and stories about the 12 selected partipants (patients, caregivers). The Colon Camp / On-the-Rise event goes back almost 20 years, when it was originally set up as an annual summer camp that had a photo-shoot that produced a 12-month "Colondar" publication showcasing the 12 partipants who attended the camp.

5. Both organizations say that they focus on four areas of interest. For FightCRC, the four (very broad) areas are: (1) Advocacy, (2) Awareness, (3) Education, and (4) Research. In the case of The Colon Club, the four (rather narrow) areas of focus are: (1) the Colon Talk message board, (2) the Kimberly Fund, (3) the Colon Camp / On-the-Rise event, and (4) the Colon Club Blog.

You can have a look at the web sites for the two organizations now to see what has changed as of January 1, 2024. You might be surprised to discover what has been added, what has been removed forever, and what has remained unchanged.

The big question now is: What is the future for the four pillars of Colon Club?

Does anyone have any thoughts now on what this takeover might mean specifically for the future of our Colon Talk message board in the face of the FightCRC juggernaut???

Utwo
Posts: 285
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: 《 The Times They Are a-Changin' 》

Postby Utwo » Mon Jan 15, 2024 9:06 am

O Stoma Mia:
"The big question now is: What is the future for the four pillars of Colon Club?
Does anyone have any thoughts now on what this takeover might mean specifically for the future of our Colon Talk message board in the face of the FightCRC juggernaut???
"

Colon Cancer Club forum is gradually dying and becoming irrelevant.
People are moving to Facebook groups.
It's the same issue with almost all other forums (with a few exceptions like MountainProject).
You can do nothing about this.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

ronnieciao
Posts: 95
Joined: Sat Nov 08, 2014 1:58 pm
Location: Northern Italy and UK

Re: 《 The Times They Are a-Changin' 》

Postby ronnieciao » Mon Jan 15, 2024 10:29 am

I beg to differ. Many people, especially younger ones, do not use Facebook, nor they want to. It's Facebook that is dying out if anything.
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: 《 The Times They Are a-Changin' 》

Postby Rock_Robster » Mon Jan 15, 2024 1:07 pm

ronnieciao wrote:I beg to differ. Many people, especially younger ones, do not use Facebook, nor they want to. It's Facebook that is dying out if anything.

I agree as a broad theme. I’m involved with a number of quite high volume FB groups, and constant topic of discussion and concern amongst Admins is how we can move away from Facebook as a platform. In particular, their extent and approach to oversight of groups (particularly health-related) with an alarming lack of transparency, consistency and probity is a huge operational risk as groups become larger.

Unfortunately there doesn’t seem to be an obvious solution or alternative yet that retains the same level of functionality that members value from FB.
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

Bianca10
Posts: 119
Joined: Thu Jun 29, 2023 4:46 pm

Re: 《 The Times They Are a-Changin' 》

Postby Bianca10 » Mon Jan 15, 2024 5:07 pm

Imo and experience this is my preferred platform and group :)
I’m in the UK, 35 years old if we’re taking age into consideration, and the bowel cancer forum and FB groups do seem to be the most popular but I have to say for me at least just from reading people’s stories on here has helped me so much, the expertise and advice has been invaluable and this is also the forum I feel most comfortable on. I hope it continues!
FB overwhelms me sometimes and although it can’t be helped I find it can be quite tough on there.

roadrunner
Posts: 446
Joined: Sun Jan 12, 2020 8:46 pm

Re: 《 The Times They Are a-Changin' 》

Postby roadrunner » Tue Jan 16, 2024 12:42 pm

FB is just a data mining/marketing engine, which leads to the issues cited by Rob above and other downsides. This forum is far, far superior because it has good motives and is not just a data mining operation, but it is difficult to compete with name recognition and “functionality.” I, too, have noticed a significant drop off of engaged, productive posting here that I can only attribute to FB’s commercially calculated siren song. I hope that reverses, as this forum has been of great service and impact, but it’s hard to compete with Zuckerberg.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

rp1954
Posts: 1846
Joined: Mon Jun 13, 2011 1:13 am

Re: 《 The Times They Are a-Changin' 》

Postby rp1954 » Wed Jan 17, 2024 11:59 am

O Stoma Mia:
"The big question now is: What is the future for the four pillars of Colon Club?
Does anyone have any thoughts now on what this takeover might mean specifically for the future of our Colon Talk message board in the face of the FightCRC juggernaut???
"

I think FightCRC should give us a decent link to attract a certain critical thinking viewership if they are really propatient rather than institutionally driven and fund raising.

Utwo wrote:Colon Cancer Club forum is gradually dying...
People are moving to Facebook groups.
It's the same issue with almost all other forums (with a few exceptions like MountainProject).
You can do nothing about this.

Ummm, maybe - the power of FB glitz and advertising with an unequal exchange of viewers and members with ColonTown.
Question (Rob, U2???): Is there some kind of problem discussing or linking Colon Talk from FB?
Since I don't use a Facebook membership, my FB views mostly are those that have been available without subscribing, as have been variously available over time, either without membership, sometimes deeper viewing with different browsers, or conversations that I have been copied on. I am left wondering whether ColonTown has an easy, efficient search across the ~120 communities if you have to be an accepted member to each one.

...and becoming irrelevant.

Colon Talk is quite relevant even if we are exterminated.
ColonTalk is relevant until the generic based techniques that we've dug up are in wide spread use, or at least, general awareness of both patients and doctors starting with the Day 1 issues, extending to various missed opportunities that are so common especially in the first year or two, but extending much further.

From my perspective, I'd say 50% of the true stage 2 and 3 patients that actual die are victims of ignorance of the generic based techniques that we found and utilized. I think the unnecessary death rate for stage 4 is much higher. The other CRC websites are/were far less functional and useful that ColonTalk. In my limited experience, I tend to view ColonTown as more chummy and tech/trial oriented but less generically penetrating, although I know they have had some strong contributors.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Rock_Robster
Posts: 1017
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: 《 The Times They Are a-Changin' 》

Postby Rock_Robster » Wed Jan 17, 2024 6:16 pm

RP I’m not aware of any issue discussing or linking between this group and FB - I must admit I don’t do it very much (probably just because the interface between platforms is manual and clunky), but no other good reason. The FB groups I admin are all private so I can’t link to or post content here (or link to screen shots etc.), but given this group is public we could link the other way. A few folk have posted screenshots from this forum in private FB groups too.

If I understood your Q correctly?
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev

User avatar
Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: 《 The Times They Are a-Changin' 》

Postby Peregrine » Sat Jan 20, 2024 5:40 am

Rock_Robster wrote:RP I’m not aware of any issue discussing or linking between this group and FB - I must admit I don’t do it very much (probably just because the interface between platforms is manual and clunky), but no other good reason. The FB groups I admin are all private so I can’t link to or post content here (or link to screen shots etc.), but given this group is public we could link the other way. A few folk have posted screenshots from this forum in private FB groups too.

If I understood your Q correctly?
.

rp1954 wrote:...I am left wondering whether ColonTown has an easy, efficient search across the ~120 communities if you have to be an accepted member to each one.

Rob - I think that rp1954 had several questions, not just one. In my opinion, your reply answered, in part, some of his questions but not all of them. In any event, I have some of the same questions vis-a-vis access to Facebook and Twitter (X) message content.

  • Access to Facebook content by non-Facebook users. In the past, I used to be able to access some Colon Club Facebook messages that had been posted there as "public". I could do it without a Facebook login, and I could scroll back in time to older public messages and public announcements. What I find now is that this is no longer possible. If my Google search shows that there is a Facebook page with specific keywords that I am looking for, then Facebook will not allow me access unless I log in with a Facebook account. What happens is that a big pop-up is displayed that states: "Not Logged In: Please log in to view this page". I cannot find any way to get rid of the pop-up, and cannot access the content of the page that has the keywords that I am interested in. For example, if I now search for "Colon Camp 2024", I can get a link to the Colon Club Facebook account (https://www.facebook.com/colonclub/) but the big log-in pop-up obscures most of the Facebook page I want to see and only shows a small part of the content, not the whole page, i.e., "While we will not be hosting a Colon Camp in 2024, we're eagerly looking forward to a 2025 event filled with new ideas and the magic of Colon Club traditions..."

    I used to be able to keep up with what was going on in Colon Club (via Facebook and Twitter) by accessing the public announcements posted there, but now I am essentially blocked from doing that. Lately this has been a big, big problem for me (and other non-Facebook users) because the Colon Club team has been issuing their public announcements only on their social media accounts and not at all on the Colon Club website or on the Colon Talk message board. The announcements that are currently being displayed here on Colon Talk now are very much out-of-date, since no one on the Colon Club management team is doing updates here on the Colon Talk message board any more.
    .
  • Global keyword search of social media sites. Another issue brought up by rp1954 is a big one, from my point of view. It is the question of whether you can search for keywords across multiple private groups, such as the ˜120 private groups in Facebook's ColonTown.

    For example, if I want to see if there are any Facebook ColonTown groups that discuss PALN, SBRT, and LYMPHADENECETOMY, is it possible to do a search that tells me in which private groups these particular concepts are discussed. I don't know if it is or is not possible in Facebook. In contrast, I do know that on Colon Talk, it is indeed possible to use the search options to track down where and when all such concepts have been discussed here on this board. This is one reason why I am not so keen on registering on Facebook. I think it would be so frustrating trying to extract relevant information from a system like that.
    .
  • Other. I have other reasons for not wanting to deal with Facebook/ Twitter, etc, which concern their insistence on aggressive data-harvesting -- but that's another issue

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: 《 The Times They Are a-Changin' 》

Postby Bpaint » Mon Jan 29, 2024 8:47 am

I am on Facebook for the single purpose of accessing the Colontown Facebook groups. I find them to be incredibly useful, especially the groups addressing clinical trials and new treatments, because of the input from a large number of patients and researchers.

I’ve also learned a lot and gained support from this forum, but it isn’t nearly as active as it used to be or as the Facebook groups are, and lately seems to trend heavily toward discussions about supplements/alternative treatments, which is fine but overall less helpful for what I am interested in learning about.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri


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