Re: my question on a new "therapy" (subject line changed)

"J" <[EMAIL PROTECTED]> wrote in message
news:[EMAIL PROTECTED]
> Jim Beaver wrote:
>
> > "J" <[EMAIL PROTECTED]> wrote in message
> > news:[EMAIL PROTECTED]
> > > Jim Beaver wrote:
> > >
> > > > My wife has Stage IV adenocarcinoma of the lung with mets in
thesternum,
> > > > lumbar spine and hip.  She's 45.  She's just started her
secondthree-week
> > > > cycle of navelbine & cisplatin, and just finished 16 radiation
sessions.
> > > >
> > > > A LOT of people have been pointing us toward the Cytoluminescent
Therapy
> > > > treatment available in Ireland (and also Canada?).  I've seen
theirwebsite
> >
> > > > and also seen a documentary produced by an L.A. film producer who
has
> > > > undergone the treatment.  It sounds awfully good, so of course I'm
> > > > suspicious.
> > > >
> > > > My wife's oncs have, for the most part, appeared to be completely or
> > almost
> > > > completely unaware of the process.
> > >
> > > Jim,
> > > Before posting unproven therapies to alt.support.cancer, please read
> > > http://www.cancersupporters.com/asc/charter.html
> >
> > I did, but I guess I missed something.  I was not promoting in any
manner
> > this therapy.  I just wanted to know if anyone here had heard of it.
Can
> > you point out to me the part in the charter that proscribes a post like
> > mine?  I certainly didn't intend to break any rules.  I've been lurking
for
> > several weeks, but obviously still don't have the hang of the group.
Sorry.
>
> If you cannot resist posting a cure or treatment here, post the complete
> treatment description with supporting data. That would include clinical
trial
> results and papers published in reputable journals. Provide your
connection or
> affiliation-financial or otherwise-with the product, the company, board of
> directors, or owners. Provide your qualifications to discuss this product,
> including but not limited to degrees, positions, experience, titles,
> publications, and references. Links to this information are acceptable.
[copied
> from the charter].
>
> Besides Jim,
> there are readers out there who might get their hopes up..ie go off on a
tangent
> to find this "new therapy" and abandon their conventional treatments, so
in a
> way, posting such can "encourage others to stop conventional treatment".
(in the
> Charter).  Some run "treatments" by the doctors on sci.med.diseases.cancer
so
> they can discuss it or comment.  But now there's a problem with that too,
> because patients are posting and staying on that newsgroup. The Charter
doesn't
> cover s.m.d.c.
>
> It was felt best to do it that way for A.S.C., to stop the real "spammers"
> trying to "sell" unproven therapies on alt.support.cancer.
>
> Don't sweat it as they say. Just understand the reality of unproven
therapies.
> If they worked, they'd be conventional.

Okay, let me see if I get this straight.  I am not a proponent, seller, or
believer of any therapies I have mentioned.  I'm just a guy with a wife
who's got Stage IV lung cancer and I'm looking for information.  I hear
about something from several people who may or may not know what they're
talking about.  It costs a ton of money.  I go to a group called
alt.SUPPORT.cancer and ask if anyone has ever heard of this.  I get told
that I am not allowed to post alternative therapies here.  Does that mean I
can't ask if anyone's ever heard of this?  I get told, I think, that I by
asking about this therapy, I endanger people who might run off and try it
without knowing the facts.  How can they learn the facts?  Apparently the
ONE place they're not allowed to ask is here on alt.SUPPORT.cancer.  So that
leaves me with one question:  is there a newsgroup that ACTUALLY supports
patients and their families who would like to know whether something is
legitimate or snake oil?  Because obviously this isn't the place.

If my house is on fire and twenty people are telling me how to put it out,
and one guy says, "You may not believe it but I've proven that I can put out
house fires by throwing $20,000 worth of dead fish on the fire," I'd love to
be able to go to alt.support.housefires or sci.physics.housefires and ask if
anyone has ever heard of this and is it worth the twenty grand.  What it
appears I'm being told here is, don't come around here pushing
fish-as-fire-retardant, you spammer!

Okay.  I will seek information on support for cancer somewhere else.  Thank
you.

Jim Beaver (not affiliated with any firm, company, treatment, establishment,
therapy, notion, quackery, professional or amateur medical science, in any
way shape or form related to cancer, illness, or any other condition--just a
guy whose fucking wife is dying and would like to find an answer somewhere,
even if I have to turn to a support group like this to do it.)