Hi Nicole, Thanks for replying your comments are always so informative. I am very happy that Evan did very well with his BMT and is healthy
Yashar has only had one round of H-ATG. Throughout the years, increasing the dose of CsA is what would increase his counts whenever they dipped. This last drop in counts occurred back in May 2012 right around the time when his Pedi-Hem Dr. retired and Yashar was sent to "Adult Medicine".
What a nightmare as the new Dr seemed to have disregarded or maybe didn't even read his medical record.?? About the only thing she did correctly was to have put him on the transplant list/search through Stanford Hospital. Other than that, we didn't feel like Yashar was getting proper care and since have found a new Dr. that we're very happy with.
The latest BMB showed that Yashar has a 20% PNH Clone, but has no symptoms. His new doctor decided to change his CsA from Sandimmune to Gengraf. He's been on Gengraf for about a month and we've already seen a rise in his counts. His Retic is higher than it's ever been and we're currently just watching to see what happens. He feels great and looks great and all of his labs have been really good. I don't know what this may mean, but it surely does give us time to make better decisions.
As far as transplant is concerned. The first Dr. that initiated the search didn't seem to think the options found through the search were good enough for Yashar. She really didn't say why and instead was recommending another round of ATG.
Yashar's new Dr. however, wants to try this CsA change before deciding to proceed with BMT. It might be because his Platelet count is at around 100K and his WBC is Normal as is his ANC and Neutraphil/Lymphocyte ratio. The only thing lagging are his RBC's which have always been the last line to show an increase. I think she wants to see if this new rise in Retics will show an increase in Peripheral Blood counts.
So, that's where we are once again. I just need to know what to ask at BMT meetings and what pre-conditioning is being done in other centers to compare.
Protocol:
Day -5 Fludarabine
Day -4 Fludarabine, ATG
Day -3 Fludarabine, ATG, Cyclophosphamide
Day -2 Fludarabine, ATG, Cyclophosphamide
Day -1 Total Body Radiation : /
That's pretty much where we're at...