CHOIR and CREATE studies - EPO

  Thanks for your considered response - yes, to be clearer, I'm
wondering if for me a higher hgb target might be a better option. Of
course I can discuss the pros and cons of epo shots with  my neph, and
I have, quite fully. But with modern medicine I think often the
discussion for an individual patient can go into territory beyond what
the current dominant methodology of the evidence-based model
proscribes. Evidence-based medicine is great, as far as it goes. But
what comes out of this methodology, generally, are general outlines
for the average patient. The problem is, some of us don't fit the
profile of the average patient.
      I think that with the black box warning on epo, pushing my neph
to go higher than the 10-12 range is asking quite a bit. Especially
since my investigation into the whole issue is far from complete.   In
my experience, in this modern world of the internet and interconnected
libraries, Pubmed, etc, a motivated patient can become a mini-expert
on any given condition. What the patient lacks of course is clinical
experience, the ability to read between the lines b/c of years of
seeing patterns and having strong hunches.
  As you suggest in your post, (and a bunch of other authors suggest
in papers written about the CREATE and CHOIR studies), there is a lot
more that is unknown about the issue of epo and ESAs.  And I'm
thinking that one group that is motivated to explore the boundaries
here are patients who have the most at stake.
   Its great to hear back from other people with their individual
experiences. It helps fill in the puzzle. Like Betsy's experience with
her son - the filling in of lived experience that helps all of us know
enough to pursue the best clinical outcome. The randomized,
placebo-controlled, double-blind trials give us the big picture,and
warn us of things we might not see coming. And then I think there is
room to become unblinded, so to speak, and look closely at whether or
not we match the phenomenon the study was looking at. Its tricky, to
say the least, but also the new frontier.
    I saw it when I worked in an HIV/AIDS clinic in the mid 90's -
guys who were on the internet every night pushing the boundaries of
what was then known were typically the first guys to get ahold of the
triple therapy and then some of them, I dare say, may have saved their
own lives. Of course these same guys were sometimes annoying as hell,
but that comes with the territory !
   Again, thanks ! - I'm getting some of the geeky discussion I was
looking for, after all!