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
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