Hi Shelia,

Here is my opinion: First, you don't need to be freaking out at this
point.  Being on Gleevec every other day was not ideal advice from your
local onc as you have discovered the hard way.  Counts that drop too
low have to be managed with 'booster shots' for white and red.
Platelets is a different matter.  You have been responsive to Gleevec
as you FISH shows and that is good.  You lost ground by going to the
every other day dose but it is coming back.  You have only been back on
the full dose of Gleevec since the beginning of March.  This is enough
time for the anc to drop to 500 but not enough time for the platelets
to get back to normal or below normal range.  They are often the
slowest to come down sometimes seeming to still be rising.  You do need
to be on the proper dose for 3 months to truly access your situation.
Give yourself that time to really determine what is going on. Asuming
your ANC is managed with the booster and the platelets don't drop too
low over time, I predict you will regain your low FISH level and
possibly even get to zero and will get further testing done at the PCR
level to watch for a deeper response.  If your platelets do drop too
low over time, then you will need to talk to the Mayo about how best to
manage that situation.  You may need to drop to 300 mg of Gleevec, you
may have platelet transfusions, you may assess using Neumega, a booster
for platelets.  It wll depend on how low they drop and what else is
happening, ie if you are getting to zero.  Alternatively, you may
consider switching to dasatinib (which is likely to be approved in
June) or join a trial for AMN 107 if you can't stay on Gleevec.  These
would also be choices to consider if in fact your platelets are not
being controlled by Gleevec or if you have developed any resistance.
There is lots of room to maneuver.  There are new things being made
available.
I have had CML for almost 7 1/2 years and was at 100% Ph+ most of that
time, failing one treatment after another.  You have already shown
responsiveness within 5 months and  you are regaining ground as we
speak.  I have not found a way off the rollercoaster ride but it has
its smoother moments and you get better at managing it over time.

Peace and prayers,
Christine
dx 11/98  
Hang in there.


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