Slow-moving AA / Pancytopenia, or What?
Back in May 2000, after a round of sinus surgery, I went in for some allergy testing as part of the post-surgery sinus treatment. As part of the allergy testing, I was sent for a CBC. The allergy doctor called me at work and asked me to come in and re-take the CBC, since many of the results were low. A re-take of the CBC confirmed that my reds, whites and platelets were indeed low -- not dangerously low -- but enough to get everyone's attention. I was sent to a hematologist in Huntsville, AL, and I was put through a battery of tests (including a bone marrow biopsy & aspiration). The end result of all the tests showed that my bone marrow was hypo-cellular (about 25% active cells). I tested negative for MDS, and everything else.
I went in frequently at first for CBCs, and after a while I only went in every 6 months for checks. Through the years, my counts slowly continued to decline. When I first started getting my blood checked, my platelets were around 130K to 150K. Gradually they have declined until a few months ago when they were measured at 41K. Neutrophil counts are down to ~1.3. Hemaglobin has been down to ~9.5. Through the years, I have had 3 bone marrow biopsy & aspirations (the most recent one a few months ago)... still hypo-cellular with ~20% or less active cells. Tests were negative for MDS and PNH.
I was recently sent for a 2nd opinion with a hematologist (BMT specialist) at Vanderbilt. After looking at my test results and running some tests of his own, the doctor at Vanderbilt came to the same conclusions as my local hematologist. They both hesitate to call this AA... it is "unexplained bone marrow failure resulting in pancytopenia" or something like that... but the end-result is the same as AA -- it is just moving in slow motion! I asked the doctor at Vanderbilt what percentage of people with AA have it behave like mine, and he replied, "Almost no one." He said, it does not appear that my pancytopenia is immune-related; it looks more like the bone marrow is just "wearing out."
So, we have been watching this for 9+ years, and I am just now entering the "treatment zone" where treatments are being discussed. If things continue to "progress" as they have, most likely in the next year or so, I will require some type of treatment. Treatment options discussed have included growth factors (temporary measure), ATG, and BMT. ATG does not appear to be a good option for my particular case, since my bone marrow appears to be "wearing out." This leaves us with BMT -- some day... We have already starting to find a suitable match -- my siblings (bro and sis) were not matches... there were 23 preliminary matches in the 13 million member bone marrow registry.
So, at this point, we are in a "watch and wait" mode. My next appointment is not til December 22. This waiting is driving me a little bit crazy, but I am thankful not to have to be undergoing any kind of treatment at this time.
Well, that's my story... Does anyone else out there have (or know of) slow-moving symptoms like this? Is my case of AA, pancytopenia, or whatever it is, really that odd? Any words of wisdom? I'd love to hear from you!
David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.