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Old Sat Jan 29, 2011, 12:05 PM
mscrzy1 mscrzy1 is offline
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Join Date: Jan 2011
Location: California
Posts: 103
Ryan Jay,
I'm not sure what my old hematologist's justification was for that. At the time, he was working in conjunction with Dr. Neil Young at NIH. I'm not sure if this is something he discussed with Dr. Young or not, but my dr. informed me that due to the elevated level, I was at a higher risk of relapse and AML. I do know that my B12 levels were checked and were in the normal range at the time. My hematologist always reminded me that ATG was not a cure. I was always so frustrated with him for his doom and gloom at the time. I just wanted to be happy. Anyways, I have been cyclosporin free throughout remission.

You have to remember that ATG was still trial and error in 1996 yet. My hematologist removed me from cyclosporin at 6 months (Oct 1996) even though I didn't have marked improvement with my AA at that time. I had my last blood transfusion in August 1997 and started to slowly see improvement with my counts after that transfusion. Drs. know so much more now about ATG than they did when I had it in 1996, so my hematologist's hypothesis that it could relapse due to the evidence of my elevated MCV could be null and void now.

*edited to add - I reviewed all my old medical records and it seems that my MCV was normal throughout AA, but started to show significant increase when I started to see improvement with my blood counts. I can give you an indicator of what my MCV levels have been. When I first hit "normal" blood counts post-ATG they were sitting around 121 - 123.7 and dipped after that slowly down and actually did hit the normal range for 2 years (immediately following the birth of my girls 6 years ago, interestingly enough), but has been on the rise again as my counts have been dropping off and now is sitting at 107 - 109.*

I will also add that after doing a lot of my own education on the recent developments they've come up with in AA and MDS, I have a suspicion that what I may be seeing is a slow moving secondary MDS. This is simply a guess on my part. I'm trying to be objective with it all and praying I'm wrong all at the same time. We'll have to see what a BMB shows. Yuck.

Last edited by mscrzy1 : Sat Jan 29, 2011 at 02:32 PM.
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