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Re: OFF TOPIC - just this once more, it's too important



Thanks for this post. I have had dear friends who had Pan. cancer.

At 07:18 PM 11/6/01 -0500, you wrote:


On Tue, 6 Nov 2001, Young For Life Products, Ltd wrote:

> Sorry for this, but I can't ethically NOT post this. The FDA is once
> again using terrorist methods against an alternative treatment with
> demonstrated benefit for terminal cancer patients.

I hate to jump into such an undisciplined and frequently ill-informed
discussion, especially on the XY list. The FDA is not the bogeyman it's
often made out to be (see below).

> Pray you're not a terminal cancer patient someday who finds an
> alternative treatment that helps you; it is very likely the FDA will
> take it away from you and leave you to die.


I *am* a terminal cancer patient--pancreatic cancer doesn't leave many
hostages. I've been fortunate enough to have had enough strength for the
past few months to search out clinical trials and learn a lot about how
this process works.

Because research into PC is less common than for many other forms of
cancer (only about 29,000 newly diagnosed patients each year, and most
die within six months), not many drugs or other treatments have been
properly documented as helpful specifically for PC. However, once any
drug has achieved that status for some other form of cancer, the FDA
does not prohibit its use for a non-approved disease; it just doesn't
approve it till it is demonstrably effective enough to offset the risks
that may be encountered. Lists of stage I, II, or III trials are
provided by many government agencies websites, as well as sites of
non-govenmental organizations. Requirements to qualify, location,
procedures to inquire and get inclusion in a trial, and much other
informantion accompanies each trial.

Even if I don't qualify for a particular trial (e.e.already had
radiation treatment or some competing chemo drug being compared for
relative effectiveness, have or have not had whipple surgery, etc.), my
doctor can decide to order the drug to administer locally rather than
forcing me to travel to Baltimore or Houston (two of the top centers for
pancreatic cancer--it's just that my health insurance won't cover an FDA
non-approved drug, so I have to come up with the high payments
myself. Fortunately so far one of the two FDA-approved conventional
drugs has held my condition stable, giving me time to continue to
investigate forthcoming trials and drugs that might take over when
gemcitabine fails. Many of those trials are being fast-tracked by the
FDA, so I may actually benefit from one of them.

Now I know there are "alternative cancer treatment centers," many in
Mexico, some in Canada, some even in the US, which proceed with highly
questionable treatments with little demonstrable effectiveness (usually
only a bunch of anecdotal cases)--believe me, I've been bombarded by
friends and relations who have picked up on these stories and are
absolutely convinced of numerous conspiracies to keep those sure-fire
cures from me. It's both frustrating and infuriating to be constantly
sent off to check out yet another bottled all-purpose cure for something
I may survive more than a year through prayers of many, as much exercise
and positive activities and attitude as I can muster, even the chemo and
careful monitoring by my doctors (I've been hospitalized twice so far
with infections that required IV-administered fluids and antibiotics),
but not likely through the cure-of-the-day (week, month, Newsweek
favorite) cited as the miracle drug that cured the accompanying
anecdote, and by extension every form of cancer (known to mankind or
not).

I'm not impressed that some questionable treatments are legal in one
state or another--state legislators give few bills the careful scrutiny
required by complex issues. And "doctors" prosecuted in one state often
simply move to another state and set up shop yet again--a recent case in
the next county from Bloomington involved just such an unlicensed
therapist, much loved by some of her patients and reviled by relatives
of some non-surviving patients.

Nor do I see any connection to the destruction of the WTC. The FDA has
long walked this fine line of protecting us from many potentially
harmful drugs and speeding up the process of documenting the safety and
effectiveness of those treatments that will save the lives of a few or many
potential recipients of the treatments approved.

I apologize for going on at such length, but so much nonsense has been
posted that I begin to wonder what has been done to Xywrite (strangling
one of those irrelevant posters;^) -- it used to be the main topic of
this list, as I recall...

   Dorothy


p.s. November is Pancreatic Cancer Awareness Month--you might do what
you can to encourage this killer of a number of celebrities as well as
unknown Xy-fans. Here's a press release:

  http://www.pancan.org/1advocacy/nov/pr2001.html

And a Report of the Pancreatic Cancer Progress Review Group:

  http://planning.cancer.gov/prg_assess/prg/panprg/pancreaticcprg1.htm


Cheers--and send those funny stories and movies you recommend to keep
things on the light side... Dorothy

***********
Dorothy Day
day@xxxxxxxx