Cancer Compass---another support forum

In another thread on ASC, a poster provided some links intended to
help readers find answers. That led me to not only the site he
provided, but also a Google search, which in turn led me to www.cancercompass.com.
I haven't posted there, or even "joined", but I lurked a bit. It
looks like another good forum for discussing experiences and
soliciting advice concerning cancer. There are posts by patients,
caregivers, and "members". It's moderated, which will please some and
discourage others. No posts about MI6 persecution, cure-cancer-with-
rabbit-urine, etc., but by the same token, your posts have to be
approved before they show up. The site isn't the best-designed I've
seen but it's not the worst, either. Since it isn't Usenet, you can't
crosspost here and there (or maybe I should say I don't think you
can), which again will please some and discourage others. The site
doesn't appear to be commercial (I didn't see any ads), but the sign-
up process asks for an email address, full name, etc., saying they
want it so they can "provide you with the most relevant content". I'd
recommend giving a partial name and using a throw-away email address,
in case this is used for spamming. Your posts won't show your email
or name (the moderators will remove it if you try), instead giving
just a "screen name".
Anyone else here have experience with CancerCompass?

---
CSM

csm7532@hotmail.com wrote:

> In another thread on ASC, a poster provided some links intended to
> help readers find answers. That led me to not only the site he
> provided, but also a Google search, which in turn led me to www.cancercompass.com.
> I haven't posted there, or even "joined", but I lurked a bit. It
> looks like another good forum for discussing experiences and
> soliciting advice concerning cancer. There are posts by patients,
> caregivers, and "members". It's moderated, which will please some and
> discourage others. The site
> doesn't appear to be commercial (I didn't see any ads), but the sign-
> up process asks for an email address, full name, etc., saying they
> want it so they can "provide you with the most relevant content". I'd
> recommend giving a partial name and using a throw-away email address,
> in case this is used for spamming. Your posts won't show your email
> or name (the moderators will remove it if you try), instead giving
> just a "screen name".
> Anyone else here have experience with CancerCompass?

They're sponsored by Cancer Treatments Centers of America
The advertising is in the "news" section.
Kurt and Lori went to them in June/05 when his hormone treatments were failing.
I could tell by his first PSA and the "fail" PSA, that it was aggressive and he had
less than a year.
A doctor told him 5 years. He died in May, 2006

CTCA agreed to settle Federal Trade Commission allegations that they made false and
unsubstantiated claims in advertising and promoting their cancer treatments.

I haven't had a chance to read a lot there, but some.
If there's moderators, nobody seems to be editing or hiding posts or influencing to go
to their centers.
But there's sure some dumb people there - for instance comparing CUP to leukemia.

I see some people referring others elsewhere (doctor, center, support place) with no
apparent objection from anyone.

Where do you see the moderators and the members?
Some web pages give special status to people after they've posted XXXX number of
times. (not necssarily on the basis of the quality of their posts, although that is
possible)
J

J <nswex@nalid;non> wrote:

>They're sponsored by Cancer Treatments Centers of America
>The advertising is in the "news" section.

According to a WHOIS query, the domain cancercompass.com (as well as
cancercenter.com) is registred by:

International Capital & Management Co.
4605 Tutu Park Mall
Suite # 250
St. Thomas, USVI 00802
VI

According to Google, these guys look like a venture capital investment
company which invests in health portals for some kind of return (I
couldn't quite figure out the entire ROI procedure yet). That doesn't
necessarly mean anything to the forum's quality, but it looks like
being a commercial ad-on to sell something else somewhere else.
Charity is a great sales factor!

>Kurt and Lori went to them in June/05 when his hormone treatments were failing.
>I could tell by his first PSA and the "fail" PSA, that it was aggressive and he had
>less than a year.
>A doctor told him 5 years. He died in May, 2006

Well, J, this is what you will find all over the net, in all kinds of
forums, even on the usenet. Most of the serious forums have placed a
disclaimer, saying that any Internet exchange cannot replace a real
life medical consultation and that it is - if not illegal - impossible
to make any far site diagnosis or prognosis of any kind. This is like
the Mc Donald's claim suite, because someone burned his mouth with too
hot coffee, or this nice old lady who put her cat into the microwave
after it got whet in the rain... Ever since, the manufacturer has to
place a disclaimer: "Don't put living pets into this machine etc"...
See the analogy!?

In the end, it's everybody's own responsability to seek for support on
the internet and to find a community which feels like fitting. And I
assume cancer patiens to be the most "awake" ones.

>I haven't had a chance to read a lot there, but some.
>If there's moderators, nobody seems to be editing or hiding posts or influencing to go
>to their centers.
>But there's sure some dumb people there - for instance comparing CUP to leukemia.

I couldn't find anything "dangerous" in there as well. Though, it
doesn't seem to really be moderated by experts or similar staff. But
remember: The usenet isn't moderated either (at least most of the
NGs). That makes the freedom of it. Nowadays it's tough to find a
really protected community - it would be a really closed one with the
inconvenience for those who immediately search for support. They might
not access them easily, if they find them at all. We had this whole
process and discussion on the German Web-based platform
www.krebs-kompass.de. Where does protection end and where does
censorship start - or the other way 'round?

>I see some people referring others elsewhere (doctor, center, support place) with no
>apparent objection from anyone.
>
>Where do you see the moderators and the members?
>Some web pages give special status to people after they've posted XXXX number of
>times. (not necssarily on the basis of the quality of their posts, although that is
>possible)

ACK!

I still plead for the usenet - and engaged regulars like you, Steph,
Peter and others are

Best,

Marianne

--
"L'Amérique? C'est l'évolution de la barbarie à la décadence,
sans toucher la culture." (Georges Clemenceau, 1922)

csm7532@hotmail.com wrote:

> In another thread on ASC, a poster provided some links intended to
> help readers find answers. That led me to not only the site he
> provided,

He's a she - Boston Rn
http://www.cancercare.org/about_us/staff_board.php
Looks like pharmas, lawyers, promotional companies, communications companies, NY 5th
Ave Hospitals meets Boston hospitals.
Same for the donors lists.

There's some MD's listed, but don't specify type.
No sign that I could see of representation from Radiation oncology nor Surgery.
Obviously cannot assess the posts.

Answers? There's lots of answers here, but if people don't want to hear.
There's more than one way to chase rainbows...

J

On Nov 26, 2:05 pm, Marianne Kestler <nospam_id...@gmx.de> wrote:
> J <nswex@nalid;non> wrote:
> >They're sponsored by Cancer Treatments Centers of America
> >The advertising is in the "news" section.

I didn't go there, so I missed it. I only read through posts,
treating it like a newsgroup. On those pages, I saw things that first
looked like ads (bright colors, etc. meant to draw the eye) but were
not.

> According to a WHOIS query, the domain cancercompass.com (as well as
> cancercenter.com) is registred by:
>
> International Capital & Management Co.
> 4605 Tutu Park Mall
> Suite # 250
> St. Thomas, USVI 00802
> VI
>
> According to Google, these guys look like a venture capital investment
> company which invests in health portals for some kind of return (I
> couldn't quite figure out the entire ROI procedure yet). That doesn't
> necessarly mean anything to the forum's quality, but it looks like
> being a commercial ad-on to sell something else somewhere else.
> Charity is a great sales factor!

I missed any sales attempts. The posts I read there were people's
personal experience with things like peripheral neuropathy. I didn't
see recommendations to go to any specific health provider or use any
particular meds, although I should say that I didn't spend a lot of
time there so I could easily have missed some. What I also didn't see
was any completely off-topic rantings, or whacko cancer "cures". I
have to assume the moderation team filters those out.
VI? Sounds like I should go to their offices, evaluate the place
personally!

> >Kurt and Lori went to them in June/05 when his hormone treatments were failing.
> >I could tell by his first PSA and the "fail" PSA, that it was aggressive and he had
> >less than a year.
> >A doctor told him 5 years. He died in May, 2006
>
> Well, J, this is what you will find all over the net, in all kinds of
> forums, even on the usenet. Most of the serious forums have placed a
> disclaimer, saying that any Internet exchange cannot replace a real
> life medical consultation and that it is - if not illegal - impossible
> to make any far site diagnosis or prognosis of any kind. This is like
> the Mc Donald's claim suite, because someone burned his mouth with too
> hot coffee, or this nice old lady who put her cat into the microwave
> after it got whet in the rain... Ever since, the manufacturer has to
> place a disclaimer: "Don't put living pets into this machine etc"...
> See the analogy!?
>
> In the end, it's everybody's own responsability to seek for support on
> the internet and to find a community which feels like fitting. And I
> assume cancer patiens to be the most "awake" ones.

I'm not sure what you mean by the "awake" bit, but yes, we should all
look for places where we can get the support we need. This (ASC) is
certainly one such place for many. I think the Compass site is
another, though maybe more time on it would lead to a different
conclusion. It seems to complement ASC somewhat, being moderated
while ASC is not.

> >I haven't had a chance to read a lot there, but some.
> >If there's moderators, nobody seems to be editing or hiding posts or influencing to go
> >to their centers.

I found an edited post during my first brief perusal. The moderators
made a clear note where they edited/redacted. As for hiding posts, I
freely admit that I didn't see any posts that were hidden.

> >But there's sure some dumb people there - for instance comparing CUP to leukemia.

It isn't surprising that they don't moderate out stupidity. I've been
on moderated Usenet groups, and found plenty of stupidity, though not
as much as in their unmoderated variants. Moderation varies according
to the goals of the specific group. You'd have to spend some time
reading through their docs to get a clear idea of what would be
moderated and what not, and even then might be surprised. They could
have a policy against any post with the word "Belgium" in it, or
require a prime number of punctuation marks. That's part of the
problem with moderation, that the moderators can make arbitrary, silly
rules. Anyone here could create a moderated variant of ASC. The
content would then depend greatly on who moderated it.

> I couldn't find anything "dangerous" in there as well. Though, it
> doesn't seem to really be moderated by experts or similar staff. But
> remember: The usenet isn't moderated either (at least most of the
> NGs). That makes the freedom of it. Nowadays it's tough to find a
> really protected community - it would be a really closed one with the
> inconvenience for those who immediately search for support. They might
> not access them easily, if they find them at all. We had this whole
> process and discussion on the German Web-based platformwww.krebs-kompass.de. Where does protection end and where does
> censorship start - or the other way 'round?
>
> >I see some people referring others elsewhere (doctor, center, support place) with no
> >apparent objection from anyone.
>
> >Where do you see the moderators and the members?
> >Some web pages give special status to people after they've posted XXXX number of
> >times. (not necssarily on the basis of the quality of their posts, although that is
> >possible)

Every post is clearly marked with both a screen name and a "type"
indicator, to the left of the post content. The types I saw were
Patient, Caregiver, and Member. The signup allows you to identify
yourself as a Patient, Caregiver, Survivor, Doctor/Nurse, or Other. I
don't know what they do to verify, if anything. Of course, they
*know* who the Members are. I didn't see any posts from moderators.
In one moderated Usenet group I used to frequent, the moderators were
"secret", although most of us had a pretty good idea who they were. I
don't know whether Compass uses this policy. Perhaps a bit more time
would reveal a post where the poster was identified as a Moderator.

> ACK!
>
> I still plead for the usenet - and engaged regulars like you, Steph,
> Peter and others are

I don't like to predict the future, but I suspect I'll spend at least
as much time here as on the Compass. At the moment, I don't have a
lot of time for either, but that could change at any time. The
Compass site isn't, IMO, a replacement for ASC, but rather an
additional resource for those interested. Enough time on it could
well expose a fatal flaw in it, or possibly a great benefit.

---
CSM

<csm7532@hotmail.com> wrote in message
news:2ec6e7e0-efa9-42ab-a7b4-b5779c641bc1@s19g2000prg.googlegroups.com...
> On Nov 26, 2:05 pm, Marianne Kestler <nospam_id...@gmx.de> wrote:
>> J <nswex@nalid;non> wrote:
>> >They're sponsored by Cancer Treatments Centers of America
>> >The advertising is in the "news" section.
>
> I didn't go there, so I missed it. I only read through posts,
> treating it like a newsgroup. On those pages, I saw things that first
> looked like ads (bright colors, etc. meant to draw the eye) but were
> not.
>
>> According to a WHOIS query, the domain cancercompass.com (as well as
>> cancercenter.com) is registred by:
>>
>> International Capital & Management Co.
>> 4605 Tutu Park Mall
>> Suite # 250
>> St. Thomas, USVI 00802
>> VI
>>
>> According to Google, these guys look like a venture capital investment
>> company which invests in health portals for some kind of return (I
>> couldn't quite figure out the entire ROI procedure yet). That doesn't
>> necessarly mean anything to the forum's quality, but it looks like
>> being a commercial ad-on to sell something else somewhere else.
>> Charity is a great sales factor!
>
> I missed any sales attempts. The posts I read there were people's
> personal experience with things like peripheral neuropathy. I didn't
> see recommendations to go to any specific health provider or use any
> particular meds, although I should say that I didn't spend a lot of
> time there so I could easily have missed some. What I also didn't see
> was any completely off-topic rantings, or whacko cancer "cures". I
> have to assume the moderation team filters those out.
> VI? Sounds like I should go to their offices, evaluate the place
> personally!
>
>> >Kurt and Lori went to them in June/05 when his hormone treatments were
>> >failing.
>> >I could tell by his first PSA and the "fail" PSA, that it was aggressive
>> >and he had
>> >less than a year.
>> >A doctor told him 5 years. He died in May, 2006
>>
>> Well, J, this is what you will find all over the net, in all kinds of
>> forums, even on the usenet. Most of the serious forums have placed a
>> disclaimer, saying that any Internet exchange cannot replace a real
>> life medical consultation and that it is - if not illegal - impossible
>> to make any far site diagnosis or prognosis of any kind. This is like
>> the Mc Donald's claim suite, because someone burned his mouth with too
>> hot coffee, or this nice old lady who put her cat into the microwave
>> after it got whet in the rain... Ever since, the manufacturer has to
>> place a disclaimer: "Don't put living pets into this machine etc"...
>> See the analogy!?
>>
>> In the end, it's everybody's own responsability to seek for support on
>> the internet and to find a community which feels like fitting. And I
>> assume cancer patiens to be the most "awake" ones.
>
> I'm not sure what you mean by the "awake" bit, but yes, we should all
> look for places where we can get the support we need. This (ASC) is
> certainly one such place for many. I think the Compass site is
> another, though maybe more time on it would lead to a different
> conclusion. It seems to complement ASC somewhat, being moderated
> while ASC is not.
>
>> >I haven't had a chance to read a lot there, but some.
>> >If there's moderators, nobody seems to be editing or hiding posts or
>> >influencing to go
>> >to their centers.
>
> I found an edited post during my first brief perusal. The moderators
> made a clear note where they edited/redacted. As for hiding posts, I
> freely admit that I didn't see any posts that were hidden.
>
>> >But there's sure some dumb people there - for instance comparing CUP to
>> >leukemia.
>
> It isn't surprising that they don't moderate out stupidity. I've been
> on moderated Usenet groups, and found plenty of stupidity, though not
> as much as in their unmoderated variants. Moderation varies according
> to the goals of the specific group. You'd have to spend some time
> reading through their docs to get a clear idea of what would be
> moderated and what not, and even then might be surprised. They could
> have a policy against any post with the word "Belgium" in it, or
> require a prime number of punctuation marks. That's part of the
> problem with moderation, that the moderators can make arbitrary, silly
> rules. Anyone here could create a moderated variant of ASC. The
> content would then depend greatly on who moderated it.
>
>> I couldn't find anything "dangerous" in there as well. Though, it
>> doesn't seem to really be moderated by experts or similar staff. But
>> remember: The usenet isn't moderated either (at least most of the
>> NGs). That makes the freedom of it. Nowadays it's tough to find a
>> really protected community - it would be a really closed one with the
>> inconvenience for those who immediately search for support. They might
>> not access them easily, if they find them at all. We had this whole
>> process and discussion on the German Web-based
>> platformwww.krebs-kompass.de. Where does protection end and where does
>> censorship start - or the other way 'round?
>>
>> >I see some people referring others elsewhere (doctor, center, support
>> >place) with no
>> >apparent objection from anyone.
>>
>> >Where do you see the moderators and the members?
>> >Some web pages give special status to people after they've posted XXXX
>> >number of
>> >times. (not necssarily on the basis of the quality of their posts,
>> >although that is
>> >possible)
>
> Every post is clearly marked with both a screen name and a "type"
> indicator, to the left of the post content. The types I saw were
> Patient, Caregiver, and Member. The signup allows you to identify
> yourself as a Patient, Caregiver, Survivor, Doctor/Nurse, or Other. I
> don't know what they do to verify, if anything. Of course, they
> *know* who the Members are. I didn't see any posts from moderators.
> In one moderated Usenet group I used to frequent, the moderators were
> "secret", although most of us had a pretty good idea who they were. I
> don't know whether Compass uses this policy. Perhaps a bit more time
> would reveal a post where the poster was identified as a Moderator.
>
>> ACK!
>>
>> I still plead for the usenet - and engaged regulars like you, Steph,
>> Peter and others are
>
> I don't like to predict the future, but I suspect I'll spend at least
> as much time here as on the Compass. At the moment, I don't have a
> lot of time for either, but that could change at any time. The
> Compass site isn't, IMO, a replacement for ASC, but rather an
> additional resource for those interested. Enough time on it could
> well expose a fatal flaw in it, or possibly a great benefit.
>
> ---
> CSM


The site posts their financials online, they are non profit.

I do like the fact the medical advisory board posts their names and
credentials.

I agree with you different people have different likes and needs.

Alex

friend of mine decided to go to one of these facilities ["which
specialize in treating late-stage cancer patients"] since he wasn't
given any hope from more conventional sources -

looked 'em up at the time - back in the 90's they settled with the ftc
for false advertising [very aggressive style of claims]
http://www.quackwatch.org/02Consumer...ions/ctca.html

they have since adopted an agressive [legal] marketing technique [which
snared my friend]

http://www.nurturemarketing.com/arti...reforlife.html

"The privately held CTCA is "nicely profitable," generates revenues "in
the $500 million range," and has been "growing dramatically," Bonner
said. Top-line growth has been at the rate of 20 percent a year, he
said."
-----------------------------------------------------------------------------------
copyright info on the website:

CancerCompass: Empowering Cancer Patients to Make Informed Cancer
Decisions
Copyright

© 2004 International Capital & Management Company, LLLP. All rights
reserved. Cancer Treatment Centers of America, Inc. has an exclusive
license to make commercial use of all copyrighted materials.
-----------------------------------------------------------------------------------------------------

International Capital and Management Company (ICMC); "Private Merchant
Banking Firm",
chairman and founder Richard J. Stephenson -

20 years ago his mother [Mary Brown Stephenson] was a cancer patient who
died,
he started [provided all startup capital] a cancer research foundation,

Cancer Research Gateway - a not-for-profit 501(c)(3) organization
http://www.gatewayforcancerresearch....ual-report.cfm

and then the separate ctca treatment hospital network - for profit with
'x'% going to the foundation

while for tax reasons they are registered in the islands, as is the
mechant back, they are separate entities, albeit, interlocked boards.

tax issues are big on his list - he serves on the board of freedomworks
http://www.freedomworks.org/know/board.php
http://www.pfaw.org/pfaw/general/default.aspx?oid=23333

his merchant bank provides "management advisory services to Cancer
Treatment Centers of America"

he owns about 20% of Cancer Therapeutics, patent holder for many
biotherapies amongst many other holdings


paul

Marianne Kestler wrote:
>
> J <nswex@nalid;non> wrote:
>
> >They're sponsored by Cancer Treatments Centers of America
> >The advertising is in the "news" section.
>
> According to a WHOIS query, the domain cancercompass.com (as well as
> cancercenter.com) is registred by:
>
> International Capital & Management Co.
> 4605 Tutu Park Mall
> Suite # 250
> St. Thomas, USVI 00802
> VI
>
> According to Google, these guys look like a venture capital investment
> company which invests in health portals for some kind of return (I
> couldn't quite figure out the entire ROI procedure yet). That doesn't
> necessarly mean anything to the forum's quality, but it looks like
> being a commercial ad-on to sell something else somewhere else.
> Charity is a great sales factor!
>
> >Kurt and Lori went to them in June/05 when his hormone treatments were failing.
> >I could tell by his first PSA and the "fail" PSA, that it was aggressive and he had
> >less than a year.
> >A doctor told him 5 years. He died in May, 2006
>
> Well, J, this is what you will find all over the net, in all kinds of
> forums, even on the usenet. Most of the serious forums have placed a
> disclaimer, saying that any Internet exchange cannot replace a real
> life medical consultation and that it is - if not illegal - impossible
> to make any far site diagnosis or prognosis of any kind. This is like
> the Mc Donald's claim suite, because someone burned his mouth with too
> hot coffee, or this nice old lady who put her cat into the microwave
> after it got whet in the rain... Ever since, the manufacturer has to
> place a disclaimer: "Don't put living pets into this machine etc"...
> See the analogy!?
>
> In the end, it's everybody's own responsability to seek for support on
> the internet and to find a community which feels like fitting. And I
> assume cancer patiens to be the most "awake" ones.
>
> >I haven't had a chance to read a lot there, but some.
> >If there's moderators, nobody seems to be editing or hiding posts or influencing to go
> >to their centers.
> >But there's sure some dumb people there - for instance comparing CUP to leukemia.
>
> I couldn't find anything "dangerous" in there as well. Though, it
> doesn't seem to really be moderated by experts or similar staff. But
> remember: The usenet isn't moderated either (at least most of the
> NGs). That makes the freedom of it. Nowadays it's tough to find a
> really protected community - it would be a really closed one with the
> inconvenience for those who immediately search for support. They might
> not access them easily, if they find them at all. We had this whole
> process and discussion on the German Web-based platform
> www.krebs-kompass.de. Where does protection end and where does
> censorship start - or the other way 'round?
>
> >I see some people referring others elsewhere (doctor, center, support place) with no
> >apparent objection from anyone.
> >
> >Where do you see the moderators and the members?
> >Some web pages give special status to people after they've posted XXXX number of
> >times. (not necssarily on the basis of the quality of their posts, although that is
> >possible)
>
> ACK!
>
> I still plead for the usenet - and engaged regulars like you, Steph,
> Peter and others are
>
> Best,
>
> Marianne
>
> --
> "L'Amérique? C'est l'évolution de la barbarie à la décadence,
> sans toucher la culture." (Georges Clemenceau, 1922)

"Paul T. Holland" wrote:

> friend of mine decided to go to one of these facilities ["which
> specialize in treating late-stage cancer patients"] since he wasn't
> given any hope from more conventional sources -
>
> looked 'em up at the time - back in the 90's they settled with the ftc
> for false advertising [very aggressive style of claims]
> http://www.quackwatch.org/02Consumer...ions/ctca.html
>
> they have since adopted an agressive [legal] marketing technique [which
> snared my friend]
>
> http://www.nurturemarketing.com/arti...reforlife.html
>
> "The privately held CTCA is "nicely profitable," generates revenues "in
> the $500 million range," and has been "growing dramatically," Bonner
> said. Top-line growth has been at the rate of 20 percent a year, he
> said."
> -----------------------------------------------------------------------------------
> copyright info on the website:
>
> CancerCompass: Empowering Cancer Patients to Make Informed Cancer
> Decisions
> Copyright
>
> © 2004 International Capital & Management Company, LLLP. All rights
> reserved. Cancer Treatment Centers of America, Inc. has an exclusive
> license to make commercial use of all copyrighted materials.
> -----------------------------------------------------------------------------------------------------
>
> International Capital and Management Company (ICMC); "Private Merchant
> Banking Firm",
> chairman and founder Richard J. Stephenson -
>
> 20 years ago his mother [Mary Brown Stephenson] was a cancer patient who
> died,
> he started [provided all startup capital] a cancer research foundation,
>
> Cancer Research Gateway - a not-for-profit 501(c)(3) organization
> http://www.gatewayforcancerresearch....ual-report.cfm
>
> and then the separate ctca treatment hospital network - for profit with
> 'x'% going to the foundation
>
> while for tax reasons they are registered in the islands, as is the
> mechant back, they are separate entities, albeit, interlocked boards.
>
> tax issues are big on his list - he serves on the board of freedomworks
> http://www.freedomworks.org/know/board.php
> http://www.pfaw.org/pfaw/general/default.aspx?oid=23333
>
> his merchant bank provides "management advisory services to Cancer
> Treatment Centers of America"
>
> he owns about 20% of Cancer Therapeutics, patent holder for many
> biotherapies amongst many other holdings
>
> paul
>
> > J <nswex@nalid;non> wrote:
>
> > >Kurt and Lori went to them in June/05 when his hormone treatments were failing.
> > >I could tell by his first PSA and the "fail" PSA, that it was aggressive and he had
> > >less than a year.
> > >A doctor told him 5 years. He died in May, 2006
>

Yes, Paul,
that's what I was trying to explain to Marianne,
They take advantage of desperate people and are expensive with their "whole body" routine.

Quite a few negative comments in the archives.(of 2 cancer newsgroups).

Advertising is getting out there though, because I see others, on other newsgroups, suggesting them to
patients.
It's highly unlikely I'd ever refer someone to their forum or center(s)

Thanks for your info, Paul. Important to know.
J

csm7532@hotmail.com wrote:

> On Nov 26, 2:05 pm, Marianne Kestler <nospam_id...@gmx.de> wrote:
> > J <nswex@nalid;non> wrote:
> > >They're sponsored by Cancer Treatments Centers of America
> > >The advertising is in the "news" section.
>
> I didn't go there, so I missed it. I only read through posts,
> treating it like a newsgroup. On those pages, I saw things that first
> looked like ads (bright colors, etc. meant to draw the eye) but were
> not.
>
> >
> > >Where do you see the moderators and the members?

I was asking for specific posts - where you'd seen them.
Never mind, now, anyway.

I think most of their webpages, on the left say
id You Know?
CancerCompassSM publishes up to 50 new cancer news articles every week!
Members can get these articles emailed to them on a weekly basis."
Probably another means of advertising

> Every post is clearly marked with both a screen name and a "type"
> indicator, to the left of the post content. The types I saw were
> Patient, Caregiver, and Member. The signup allows you to identify
> yourself as a Patient, Caregiver, Survivor, Doctor/Nurse, or Other. I
> don't know what they do to verify, if anything. Of course, they
> *know* who the Members are.

I did not see it defined anywhere. Oh, I get it now.
Members are people who sign up.
http://www.cancercompass.com/registr...learn-more.htm
J

On Nov 27, 5:25 pm, "xela56" <noacco...@nw.nl> wrote:
> <csm7...@hotmail.com> wrote in message
>
> news:2ec6e7e0-efa9-42ab-a7b4-b5779c641bc1@s19g2000prg.googlegroups.com...
>
>
>
> > On Nov 26, 2:05 pm, Marianne Kestler <nospam_id...@gmx.de> wrote:
> >> J <nswex@nalid;non> wrote:
> >> >They're sponsored by Cancer Treatments Centers of America
> >> >The advertising is in the "news" section.
>
> > I didn't go there, so I missed it. I only read through posts,
> > treating it like a newsgroup. On those pages, I saw things that first
> > looked like ads (bright colors, etc. meant to draw the eye) but were
> > not.
>
> >> According to a WHOIS query, the domain cancercompass.com (as well as
> >> cancercenter.com) is registred by:
>
> >> International Capital & Management Co.
> >> 4605 Tutu Park Mall
> >> Suite # 250
> >> St. Thomas, USVI 00802
> >> VI
>
> >> According to Google, these guys look like a venture capital investment
> >> company which invests in health portals for some kind of return (I
> >> couldn't quite figure out the entire ROI procedure yet). That doesn't
> >> necessarly mean anything to the forum's quality, but it looks like
> >> being a commercial ad-on to sell something else somewhere else.
> >> Charity is a great sales factor!
>
> > I missed any sales attempts. The posts I read there were people's
> > personal experience with things like peripheral neuropathy. I didn't
> > see recommendations to go to any specific health provider or use any
> > particular meds, although I should say that I didn't spend a lot of
> > time there so I could easily have missed some. What I also didn't see
> > was any completely off-topic rantings, or whacko cancer "cures". I
> > have to assume the moderation team filters those out.
> > VI? Sounds like I should go to their offices, evaluate the place
> > personally!
>
> >> >Kurt and Lori went to them in June/05 when his hormone treatments were
> >> >failing.
> >> >I could tell by his first PSA and the "fail" PSA, that it was aggressive
> >> >and he had
> >> >less than a year.
> >> >A doctor told him 5 years. He died in May, 2006
>
> >> Well, J, this is what you will find all over the net, in all kinds of
> >> forums, even on the usenet. Most of the serious forums have placed a
> >> disclaimer, saying that any Internet exchange cannot replace a real
> >> life medical consultation and that it is - if not illegal - impossible
> >> to make any far site diagnosis or prognosis of any kind. This is like
> >> the Mc Donald's claim suite, because someone burned his mouth with too
> >> hot coffee, or this nice old lady who put her cat into the microwave
> >> after it got whet in the rain... Ever since, the manufacturer has to
> >> place a disclaimer: "Don't put living pets into this machine etc"...
> >> See the analogy!?
>
> >> In the end, it's everybody's own responsability to seek for support on
> >> the internet and to find a community which feels like fitting. And I
> >> assume cancer patiens to be the most "awake" ones.
>
> > I'm not sure what you mean by the "awake" bit, but yes, we should all
> > look for places where we can get the support we need. This (ASC) is
> > certainly one such place for many. I think the Compass site is
> > another, though maybe more time on it would lead to a different
> > conclusion. It seems to complement ASC somewhat, being moderated
> > while ASC is not.
>
> >> >I haven't had a chance to read a lot there, but some.
> >> >If there's moderators, nobody seems to be editing or hiding posts or
> >> >influencing to go
> >> >to their centers.
>
> > I found an edited post during my first brief perusal. The moderators
> > made a clear note where they edited/redacted. As for hiding posts, I
> > freely admit that I didn't see any posts that were hidden.
>
> >> >But there's sure some dumb people there - for instance comparing CUP to
> >> >leukemia.
>
> > It isn't surprising that they don't moderate out stupidity. I've been
> > on moderated Usenet groups, and found plenty of stupidity, though not
> > as much as in their unmoderated variants. Moderation varies according
> > to the goals of the specific group. You'd have to spend some time
> > reading through their docs to get a clear idea of what would be
> > moderated and what not, and even then might be surprised. They could
> > have a policy against any post with the word "Belgium" in it, or
> > require a prime number of punctuation marks. That's part of the
> > problem with moderation, that the moderators can make arbitrary, silly
> > rules. Anyone here could create a moderated variant of ASC. The
> > content would then depend greatly on who moderated it.
>
> >> I couldn't find anything "dangerous" in there as well. Though, it
> >> doesn't seem to really be moderated by experts or similar staff. But
> >> remember: The usenet isn't moderated either (at least most of the
> >> NGs). That makes the freedom of it. Nowadays it's tough to find a
> >> really protected community - it would be a really closed one with the
> >> inconvenience for those who immediately search for support. They might
> >> not access them easily, if they find them at all. We had this whole
> >> process and discussion on the German Web-based
> >> platformwww.krebs-kompass.de. Where does protection end and where does
> >> censorship start - or the other way 'round?
>
> >> >I see some people referring others elsewhere (doctor, center, support
> >> >place) with no
> >> >apparent objection from anyone.
>
> >> >Where do you see the moderators and the members?
> >> >Some web pages give special status to people after they've posted XXXX
> >> >number of
> >> >times. (not necssarily on the basis of the quality of their posts,
> >> >although that is
> >> >possible)
>
> > Every post is clearly marked with both a screen name and a "type"
> > indicator, to the left of the post content. The types I saw were
> > Patient, Caregiver, and Member. The signup allows you to identify
> > yourself as a Patient, Caregiver, Survivor, Doctor/Nurse, or Other. I
> > don't know what they do to verify, if anything. Of course, they
> > *know* who the Members are. I didn't see any posts from moderators.
> > In one moderated Usenet group I used to frequent, the moderators were
> > "secret", although most of us had a pretty good idea who they were. I
> > don't know whether Compass uses this policy. Perhaps a bit more time
> > would reveal a post where the poster was identified as a Moderator.
>
> >> ACK!
>
> >> I still plead for the usenet - and engaged regulars like you, Steph,
> >> Peter and others are
>
> > I don't like to predict the future, but I suspect I'll spend at least
> > as much time here as on the Compass. At the moment, I don't have a
> > lot of time for either, but that could change at any time. The
> > Compass site isn't, IMO, a replacement for ASC, but rather an
> > additional resource for those interested. Enough time on it could
> > well expose a fatal flaw in it, or possibly a great benefit.
>
> > ---
> > CSM
>
> The site posts their financials online, they are non profit.
>
> I do like the fact the medical advisory board posts their names and
> credentials.
>
> I agree with you different people have different likes and needs.

It looks like (see Paul Holland's post elsethread) the Compass forum
is operated by a for-profit org that runs cancer centers, and sounds
(at best) a bit dodgey. It isn't at all clear to me, but then I'm not
really interested in their centers, or the financial details of the
organization. As the saying goes, I have no dog in that fight. I was
really only trying to let people know about another free online forum
for discussing cancer issues. For that, it seems quite decent, though
I'm ambivalent about moderation. Especially after some of the
complaints I've seen here about the ill effects of ASC not having
moderation, I though some might really find it helpful. Of course,
any who don't find it helpful, or are more opposed to moderation than
I, or are offended by some other aspect, are free to stay out of it.

---
CSM

Marianne Kestler wrote:

> J <nswex@nalid;non> wrote:
>
> >They're sponsored by Cancer Treatments Centers of America
> >The advertising is in the "news" section.
>
> >Kurt and Lori went to them in June/05 when his hormone treatments were failing.
> >I could tell by his first PSA and the "fail" PSA, that it was aggressive and he had
> >less than a year.
> >A doctor told him 5 years. He died in May, 2006

The doctor was from CTAC center. It was an expensive "come-on" (promise that cannot be
kept)
I see that also when centers in other countries are mentioned. Examples given are often
breast cancer patients, but people with other cancers don't always realize that they're
different, can have later recurrences and live longer, because of hormonal treatments or
Herceptin. So they are drawn to centers that make claims they cannot keep.

> Well, J, this is what you will find all over the net, in all kinds of
> forums, even on the usenet. [...]In the end, it's everybody's own responsability to seek
> for support on
> the internet and to find a community which feels like fitting. And I
> assume cancer patiens to be the most "awake" ones.

Not really. Like, in real life, there's educated people, not educated, desperate people,
not desperate, critical thinkers, and those who'll believe everything that's written. An
example would be those who jump right away when Steph or I mention PHS- GOLD (tm). Just
like the news (newspapers), when something new is mentioned regarding cancer treatments,
people get excited or over-hopeful.

Sorry I'm late Marianne. I just wanted to clarify a few points.
Now I'd like to dispense with this topic. And back to support here instead of talking about
other support places.
J