[ExI] Jaw-dropping CWRU Alzheimer's breakthrough?

[spike]

>... On Behalf Of Jeff Davis
>...Subject: Re: [ExI] Jaw-dropping CWRU Alzheimer's breakthrough?

>...Friends, I don't want to be unpleasant or conspiratorial, but something
about this has begun to bother me...

Begun?  Several of us and plenty of AD family members have been going crazy
over this.  Before you post further Jeff, it sounds like you may be behind
on what has already been posted on the topic here.  Do read up first.

>...According to one of the articles -- I don't remember where I saw it
--that rehashed the original announcement, the CWRU experiment was conducted
in 2009...

True.  But don't jump to conclusions.  Read on please.

>... That's two to three years ago.  Why are we only hearing about this now?
Why do we not have the benefit of the 2-3 years of additional research that
would have followed had the announcement been immediate? ...

This is the question plenty of us asked on 19 February, when it was learned
about the 2009 experiment, and that there were at least two others who knew
about the outcome.  There was an even more disconcerting revelation that the
description of this experiment was only now announced under duress.
Apparently the information about the 2009 experiment leaked and was about to
go open loop.

>...Can someone offer an alternative explanation for the delay, one that can
soften my suspicion that Landreth is a monstrously selfish individual.
Best, Jeff Davis

I am reserving judgment until all the facts are known, and they are likely
to be known soon, based on the pace at which this story is unfolding.
Apparently, according to hearsay in the community, Dr. Landreth was not
trying to buy up stock in Aesai or anything of the kind, but he was upon the
horns of an ethical dilemma which would drive one insane.  He was carrying a
theoretical model which counter-indicated the results seen, and
counter-indicated success in early-onset Alzheimer's patients.  

There is legitimacy in the argument that the researchers realized
uncontrolled release of the information may lead to TBCs (truly bad
consequences) such as patients taking bex off label and not telling their
doctors.  The doctors would then perhaps diagnose hypothyroidism, and give a
compensating medication known to be incompatible with bexarotene.  Landreth
and the (at least two) colleagues who knew of these results may have
realized families would clamor for the medications and go to unadvisable
lengths to get it.  Still more ethical dilemmas are presented when we
realize that 1200 bucks a month is an amount that some patients can raise
and others cannot.  It would be a bad thing if some families lost a member
under the mistaken belief that if they could raise 1200 dollars a month,
their beloved family member might have been cured.  From what I can tell, it
is unlikely bexarotene will be a cure.  It might help some however, which is
more than Aricept seems to do.  

Some may even go the route I did: look for reagent grade bexarotene and
consider the possibility of trying a much lower dose than is in Targretin.
If bexarotene is taken in experimental 10 mg doses, the risk goes down
proportionally I would think.  But this 'I would think' comment is bothering
me too.

I did a calculation that convinced me that bexarotene in the form of
targretin does not cross the barrier in that form, by design.  I am looking
at solubility levels and such: the size of the caplets suggests to me that
the bex in targretin could not be completely in solution, but that it could
be therapeutic when not completely in solution, for cancer.  This suggests
to me that bex in targretin is not a significant blood/brain barrier
crosser, but low doses of bex completely in solution, would permeate.  This
gives me the notion that we should be looking at 10 mg doses of bex
completely dissolved in about 15 grams of alcohol, which is a lowish
threshold a typical light-weight human would notice, should they devour that
much alcohol.

I sometimes feel I am sailing uncharted waters alone on this, being of a
chemistry background and thinking about the solubility angle on bexarotene.
Incompletely dissolved medications can form a colloid-equivalent, which does
not permeate the barrier, whereas a much lower (generally safer and more
affordable) dose might act as a barrier crosser, thus work better for this
particular malady, breaking up beta amyloids.

But I am not a doctor, and I don't know how to be a part of the community
that is discussing this.  They have a closed circle for perfectly legitimate
reasons: they need a group who have formal training and experience in
medical ethics.  I have none of this, but I do sympathize with their not
wanting to kill people by suggesting unproven medications for patients and
families not well-positioned to understand the risks.

Some of you hipsters offer me a clue here.  If you are watching your posting
limit, don't worry about it.  I received no complaints during our temporary
open season last week, and I as all-powerful semi-assistant moderator will
certainly not bust anyone's chops for overposting on this timely topic,
relevant directly or indirectly to every person on this list.  

spike