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Old Thu May 2, 2013, 06:52 PM
NLJabbari NLJabbari is offline
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Join Date: Aug 2006
Location: San Jose, California
Posts: 139
Hi Kevin,

Unfortunately, I don't really have answers to your questions, but I do have a couple of comments, a suggestion, and a question.

Have you tried getting in touch with AAMDS. They might be able to give you contact #'s for AA specialists throughout the country who might be able to answer your question via phone call or email.

Re: Long-term use of Neupogen--quite frankly (personally) I've never heard of anyone using it for so long. Back in 2004 when my son was dx'ed w/SAA; I recall reading a medical article where it mentioned something to the effect of the use of Neupogen and incidence of relapse. I'm really not sure if "the author" was merely suggesting that there "might" be a connection or if they were just not sure at the time.
I recall being worried because my son was getting a small dose of Neupogen for approximately 5-6 weeks post ATG. In hindsight, I don't think he even needed it as his WBC/ANC rose quite rapidly and WBC was actually at 12.? when his doctor ordered us to stop! It eventually leveled off at around the 5.0-6.0 range. He however, did eventually relapse.

Re: A second round of ATG being administered even though 2 cell line numbers are doing well--That is an excellent question and one that I'm very interested in knowing too!
My son never got a second ATG course. His doctor merely increased/switch brands of CsA and his numbers bounced back. Still, I am concerned about this because like you, 2 of his Cell-lines are in normal range, but his Hgb is still low @ (8.3) ---major concern.
I was under the impression that another round of ATG was not offered bc both his WBC/ANC is within Normal range 6.1/3500 and Platelets are at 141K
Needless to say, he has been on CsA for too long and appears to be CsA dependent at this point.

I know of a few who have had 2+ courses of ATG and are doing very well with long-term remissions.

BTW, were you diagnosed VSAA? I noticed the numbers you posted below fall within that range (I think).
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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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