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Old Fri Jul 27, 2012, 04:45 AM
NLJabbari NLJabbari is offline
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Join Date: Aug 2006
Location: San Jose, California
Posts: 139
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Hi Marlene, yes unfortunately Yashar relapsed and I'm somewhat confused with this whole "relapse" thing. In hindsight, his counts had dropped a couple of years ago and his Hematologist at the time (Pedi Medicine) boosted his CsA really high (600mg 2X) and this seemed to stop the downward spiral of his counts rather quickly. His counts would rise slightly, but not to original numbers. They would level off and his doctor would then bring his CsA dose back down to within a therapeutic range. Yashar could maintain his numbers, but is very sensitive even to the slightest wean. Prior to the relapse, he was on 200mg 2X daily for about a year.

As it so happens, this past May his Pedi Hemo Dr. retired for good and it couldn't have happened at a worst time. Relapse had not been confirmed, but we knew his numbers had dropped ( Hgb: 7.3, Plt: 66, WBC: 6.5) Mainly his Hgb and plts dropped. He was then transferred to Adult Med. where the dx of "relapse" was made. So,... not only are we dealing with relapse, but are dealing with a new doctor too. She, ordered a BMB to get a clear picture of what's going on w/Yashar's bonemarrow. She did say that his cellularity was at around 25%. She then increased his CsA dose to 300mg 2X daily and it seems like his numbers are once again stabilizing. His Hgb. is slowly creeping up, but he has had 3 PRBC transfusions since May...they are getting further apart though. His platelets haven't moved from around 66K and his WBC and ANC are Normal. The doctor had scheduled Yashar for a visit with the Bone Marrow Transplant Team at Stanford and they are currently searching for a MUdonor. She really seems to be pushing BMT (She gave us the whole lecture of why this choice was best)....but, I think we should wait a little to see what happens. We're also considering another round of ATG, but rabbit this time; since Yashar had Horse the first time around. Yashar is just tired of dealing with all the Ups and Downs of AA. He has expressed that if a "good donor match" is found for him; he wants to go that route.

We have a lot to think about...just hope Yashar continues to be semi-stable and actually feeling well.

Thanks for asking Marlene...
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06/2004 my son was dx with SAA at the age of 10. No sibling BM match. He underwent ATG (H)/CsA. Relapsed 05/12 & dx'ed w/PNH. Currently in wait/see mode for Solaris as he is asymptomatic...
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