Quote:
Originally Posted by Hopeful
Hi Shroob,
I'm glad that your mom is in good hands and that there is a PLAN in place. Having a small PNH clone is a sign that her disease may be immune mediated and may respond to the ATG. It is sometimes used as part of a pre-transplant regimen. So, it sounds like she will be getting the best of both worlds by doing the transplant search in parallel with ATG.
If she does have a transplant, don't be in a hurry to leave the security of being near the hospital for the first 100 days. You will appreciate the monitoring and quick access to experts should problem arise. 4 months is probably a worse case scenario.
Wishing her the best!
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Yes, Hopeful: you are right about the small PNH clone. It is the greatest predictor of the disease being immune-mediated. I know this firsthand: Although my mother hasn't responded to ATG in a year (except for neutrophils), Dr. Young says that my mother's disease is highly immune-mediated because of her small PNH clone. He still wants to give her some more time (because of her age) before moving on to Campath. He suggests no rabbit-atg because it can cause DNA changes in the bone marrow, whereas Campath will not (he also believes that Campath is more likely to be effective). He still insists on immunosuppressant therapy for her because of the small PNH clone. Her aplastic anemia is highly autoimmune, he says. If my mother did not have a small PNH clone, Dr. Young and his team would have suggested a different treatment for her (Cytoxan?). I never knew any of this until rather recently.
@ Shroob: I wish your mother the best of luck. Please take care.