Subject: Lesley Update - 2/15
Date: Tue, 15 Feb 2000 11:29:44 -0500

Round 3 of chemo is completed with no ill effects.  Let me rewind.

The past 3 weeks have been pretty good, although not quite as good as
the previous month.  We completed the Decadron taper from 24 mg/day to
16 mg/day.  When we got down to 18 mg/day, Lesley's aphasia got a little
worse.  Now that we're down to 16 mg/day it's even worse.  She still
communicates well but there's definitely problems with coming up with
some of the words.  The good news is that she doesn't lose her train of
thought.  Physically she's still strong - she's been doing some walking
outside and on the treadmill, and we've gone shopping on several
occasions.  She's also doing occasional exercises to work on keeping
strength in other parts of her body.  Her bad eye (left) has started to
bother her more lately.  She describes it as sort of an ache.  She's
taken some Tylenol occasionally for it.  Other than that, she hasn't
wanted or needed any pain medication.  Mentally she's been a little more
blue lately, especially in the morning.  Much of her hair is growing
back!  They say the Temodar doesn't often cause hair loss.

We met with the neuro oncologist on February 8th after having an MRI
done (routine, every 2 months to see what's going on).  He was happy to
report that there was no tumor progression (yea!) and some small signs
of other good things happening (e.g., no increased swelling).  Her blood
counts for Day 21 and Day 28 of her chemo cycle were excellent so we got
the thumbs up to begin Round 3 which we did on the 9th.  We discussed
the Decadron situation and Lesley's increased aphasia.  He wants to keep
her on the 16 mg/day since her only problem seems to be the aphasia.
There are no headaches or other signs that the dosage is too low.  He
said that Round 3 is often when the Temodar often shows an effect by
shrinking the tumor, thus there would be less of a need to reduce
swelling even more.  If Decadron had no side effect, we'd definitely
increase it.  But long term use does, especially in high doses, so the
less we can use, the better.

On the 9th, we met with the neuro ophthalmologist.  He basically saw no
change.  He does want to double her dosage of the Diamox (1000 mg/day to
2000 mg/day) but wanted to talk to the neuro oncologist first.  We're
sure the talk never happened because a) our neuro oncologist is hard to
reach, and b) the neuro ophthalmologist was leaving for vacation to
Costa Rica on the 11th, and c) he didn't call us.  He also described the
left eye optic nerve as "damaged" and the right eye optic nerve as
"swollen" due to the intracranial pressure (papilledema).  Check out the
URL if you wish:
http://www.revoptom.com/handbook/sect6b.htm
He said the decrease in Decadron may be a factor in contributing to the
swelling.  Sigh.  Wheels within wheels.  The surgery he said that he
could perform on her right eye if it starts to deteriorate is
fenestration.  Watch and wait.  He also used a Sony digital video camera
to record Lesley's eyes' reaction to light and changes in light.  Really
cool!  It's his own, but he said it has been a valuable tool.

The chemo went by with no nausea and no fatigue to speak of.  We're at
the 2nd day after completion and Lesley does seem a bit below par, but
that's not unusual for Temodar.  We've had 2 pleasant visits over the
past 3 weekends - Lesley's younger sister came for the weekend, and a
friend of mine from my early days at MITRE, Penny Miller, just left
after a nice weekend stay.  We had 2 counseling sessions with our
private counselor, and another session of "Kids Count Too!".  My sister
is visiting for a long weekend this coming weekend.  Kim is turning 11
on the 17th and Chris is turning 9 on the 22nd.  No big parties planned.

We're getting by, if not thriving.  We're hoping for some more positive
results from the chemo and that the aphasia, eye, and mental state
improve.

Dave
--
Dave Baldauf, h/o Lesley, gbm, dx/srg 8/99, rad 9/99, rad completed
10/99, debulk srg 10/99, bone flap removal srg due to infection 11/99,
started Temodar 12/99
mailto:dbaldauf@ultranet.com