I hope the break from BMS will help Bob. Are they having him do any
kind
of physical therapy? That can help a lot with stroke patients.
and have a lot with experience on ET, PV, etc.
----- Original Message -----
Sent: Monday, March 28, 2005 11:42
PM
Subject: [CML] Update on Bob W
Hi kids,
Good to see some of you posting such good news. And hoping for the
best for those of you who are having problems, whatever they might
be. Sorry to be so generic, but it's difficult to answer each and every
post. Bob is having to be taken care of more and more. So much is
going wrong.
He had his gall bladder out and is fine from that. His appetite is
gone and he is down to 147 lbs, last week when weighed. Pretty low for a
6'2" tall man who used to weigh over 200 lbs. He is very weak,
especially his legs and cannot get up from a sitting position without
help. Very difficult to get into and out of the car. I have to
lift up his legs for him. And he has had 4 transfusions (2 units each)
this month. Don't know where the bleeding is......not internal.
May be from the platelets crowding out the red cells, so his hemoglobin is
low. His CBC showed his hemoglobin to be 9.2, which is good, but then he
had a transfusion and Procrit last week. Dr Sawyers has suggested he go
off the BMS drug for a week or so and see what happens. None of us feel
that the problems are being caused by the BMS drug, but might as well check it
out. He is still in PCRU and FISH is negative according to his BMB last
week. No cytogenetics yet though. Since he has been stable so
long, Dr Sawyers feels that it won't hurt him to be off the drug for just a
little while. Then we'll see what his blood does. I found another
web based support group for ET, PV, etc, but have not posted there yet.
They may have some answers for us. I know I have learned so much from
the CML sites. Thanks, all.
Bob is not progressing any more from his strokes. He still has
aphasia and memory problems. Cannot carry on a conversation.
And some of his answers are very funny, which he enjoys too, because he knows
what he wants to say, but it just doesn't come out right!
Sorry to be so long. Wanted to bring you all up to date.
Don't have too much time for the computer, but try to keep up on all the
happenings, good or bad. You all are like a very great family to me and
you will never know how much I appreciate it.
blessed
be
with love, nancy and bob wilhelm inyokern
ca
