Hello Everyone, My 20 y-o son will be going for a third Consult in a few days for a possible BMT. Our first appointment didn't go as well as we would have liked. We found the Dr. was not happy about some of the questions I asked regarding the 4 possible 9/10 donors. I wanted to know at what marker the mismatch was and the Dr. was not happy about me asking this. We left feeling more confused than ever!
Our 2nd Appointment was better, but this new BMT Dr. felt that based on my son's current CBC (normal WBC, Platelets, ANC, but low Hgb), there were still a couple of other (treatment options) to try before considering transplant. My son was Initially dx'ed w/AA in 2004 and then PNH in May 2012. We didn't even get to really talk about transplant as the Dr. felt it was irrelevant at that particular point.
The second BMT Dr. feels that since my son's Hgb is the only cell line that is low, it is probably due more to PNH than AA and therefore he feels that trying Solaris is a better option at this time than BMT.
Since my son's primary Hematologist still thinks BMT is a better option, she has advised us to go for yet another opinion/consult with the head of BMT at Children's Hospital Oakland. We have agreed so that we can proceed with making a decision on either "Optional Treatments or BMT"
I'm reaching out to You the Marrowforums Community to ask if there are any particular questions I should be asking the BMT team? I'm hoping to leave this appointment with clear answers or at least a "feeling of clarity" and not confusion which is what We've felt after the last 2 consults.
I would appreciate hearing from anyone who has been through this process and can share any advice on relevant questions I might want to ask. I'm not sure how much info. I can ask re: the potential donors. Gender, CMV status, ??
Thanks you so much in advance.