View Single Post
  #5  
Old Fri Nov 1, 2013, 06:44 PM
NLJabbari NLJabbari is offline
Member
 
Join Date: Aug 2006
Location: San Jose, California
Posts: 139
I'm so happy that you have a related match. That is great news!

My son obtained full counts, but didn't respond until the 6th month (2004). His platelets were the first to respond and the WBC & Hgb followed. He was able to obtain 300K+ platelets and ANC in the 3-4K range and 12+ Hgb. He was on Cyclosporine (Gengraf) for about a year post ATG. Relapsed (2006) about 14 months later. He was then on (Sandimmune) but never quite recouped those counts.
The highest his platelets have been post relapse is around 180K, Hgb 9, and WBC/ANC have remained about the same.
He had another relapse in 2012 and was dx'ed with PNH clone as well. Platelets are still at 180K, WBC/ANC unchanged, but Hgb is at 7.5-8.5 range. He is currently back on (Gengraf) 400mg & 375mg

We are looking into Solaris to treat PNH
__________________
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...
Reply With Quote