Re: How often do you check counts once in remission?

From: Marlene
Date: 02 Nov 2004
Time: 12:59:51 -0500
Remote Name: 66.44.58.12

Comments

Jerilue, I don't know if your brother is on cylosporine or not. If he is, then he needs to be monitored to make sure the levels are correct. I don't know how often they check it but others with experience with it may chime in. John is not it but we still request complete blood panels/chemistry every 30 -45 days. John's liver enzymes tend to be elevated from time to time. John got sick in the spring of 2002. He was suffering from headaches and went to his GP. They took some blood and called us at 7 am the next morning telling us to get into the office now and that he would need a blood transfusion. My heart dropped into my stomach. When we got there, they walked us down the hall to the Oncologist/hemo’s office. So at first, we did not “pick” our doctor. Of course they immediately jumped to the diagnosis of leukemia without even looking at blood/bone marrow samples. They did a bone marrow biopsy and sent us to the hospital. Four red cell units and two platelet units later, John was sent home to wait for the results. At that time, they were 80% sure it was not leukemia and were most likely dealing with AA or MDS. The BMB came back incomplete but was leaning towards AA. So based on that info, I looked into the treatments for AA and found that there were very few.(ATG/ALG, bone marrow transplants or high dose cytoxan. NIH now has some new clinical trial that were not available in 2002) After the second BMB confirmed AA, we decided to do high dose cytoxan up at Johns Hopkins in Baltimore. Dr. Brodsky is running the clinical trial funded by NIH. He’s been working with AA for many years now and knows this disease. Our local Hemo had never seen AA. If we had chosen ATG, we would have found another doc with experience with AA and ATG. Very important. So we feel very comfortable with our doc at hopkins...he’s been really terrific for us....He has about 60 AA’ers enrolled in this trial and has experience with ATG and Bone Marrow transplants. If I have any questions or need a second opinion on something our local doc wants to do, I can email him and he responds usually within the same day. Hope this helps....Marlene