Re: Other medically oriented newsgroups?

Earle Jones wrote:

Is there a moderated medical newsgroup where juvenile/religious/idiotic
posters can be banned?


Hello Earle,
There's no moderated newsgroup for cancer patients.
The ACOR privat emails lists are moderated; they're called "list owners",
so a lot of the garbage one sees on newsgroups, is not allowed there.
However, there hasn't been one for cholangiocarcinoma.
The full list of groups is here http://www.acor.org/mlists/mlists.html
We've oten referred bile duct cancers or gall bladder cancer patients to
the pancreatic list (all 3 being GI- related) and sometimes diagnosed
(early and curable) as a result of searching for a source of jaundice or
gall stones). The tests and surgeries are similar, as well.

Some posters stayed with alt.support.cancer along with receiving support
and information from the ACOR group.
alt.support.cancer was very busy for a number of years, but never many
gallbladder, cholangiocarcinoma nor pancreatic cancers. Some ISP's have
since abandonel providing newsgroup services . Many of the previous
regular supporters were loved ones who'd passed away and have since moved
on with their lives and I suspect that some people support by vprivate
email, based on other commonalities, as opposed to the type of cancer; for
instance 2 or 3 wanted threads for requests for prayers. I didcouraged
that. Others wanted threads about alternative therapies, which bring all
the loona AND "quacks" to the newsgroup (again I discouraged).
alt.support.cancer was also sploged for 2-3 months. Many people disappeared
from posting during that time - reasons unknown

I hate to see you so, but just discovere that there's a cholangiocarcinoma
webpage and forum.
Started in 2005. They're registered at Guidestar. Their "Ask DR xxxx"
section is a physchologist.
I have not had time to read many posts. My suspicion is that if someone
seems to be getting in big trouble (depressed, suicidal), one or more of
the posters may contact him to ask for intervention, but don't know that
for sure.
They have a new section for people's blogs which you may wish to read
through - others' experiences
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=31

They're "Store" links to a place that sells T-shirts which were being
spammed on alt.support.cancer by a number of people.
They have a 13-page User List, which shows when a person registered. There
seems to be 7 moderators.
By clicking "home", one can click through Foundation, Mission Statement,
Board of Directors. Rich might do the forum maintenance.

I haven't had a chance to see if any of them also partipate on the forums
and those who had cholangiocarcinoma the state of their current disease
(cured, remission or still in treatment).

What is clear to me by looking at a thread in "What's new' called " I don't
get it by lisal " people aren't told by their oncologists, nor other
posters that cancers can be resistant to chemo at disgnosis and/or after
trying several types of treatments (too many mutations - caused by the
cancer growth and/or treatment). So that leaves patients or loved ones,
constantly clamoring for more, different /better, stronger, where there's
no evidence it would help.

I'll leave this with you as to where you'd like to join. My thoughts will
be with you and your wife.
You know where to find us, if you'd care to keep us updated or just vent
out, from time to time.
Best wishes,
Sincerely
J


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