The PNH is becoming a concern of mine over the last few months. I have been told that with only an 18% PNH clone, it is not an issue. IF it were to become 50-60% AND I was clinically symptomatic, that would be another case.
The Campath trial for MDS is really justs for MDS; it is even slightly different than the one they do for AA. (My friend on the AA trial has different anti-virul drugs, for example)..
There wasn't anything stated about PNH in the trial documentation, although one would think they would be somewhat related.
But, I will address this when I go down to NIH in a few weeks. As my husband put it, "now that your MDS is under control, what will you worry about next"? I guess PNH is my answer. (I tend to worry or stress out about something - not necessisarily health related). I do have a son who is a recent college grad - will be completing the Police Academy here in PA next Thursday - now I can worry about if/when he will find employment!!! It never ends for a mother
