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Old Mon May 7, 2012, 09:03 PM
Coping1 Coping1 is offline
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Join Date: Jul 2011
Location: Kentucky
Posts: 15
Catherine,

Thanks so much for your reply. Part of the problem was that my BMT doctor called me with the results (he is out of town) and I didn't have the report in front of me when I was talking to him. I asked them to send me the actual report which brought up more questions when I read it.

My local hematologist believes that I do have MDS and feels that I do need a BMT. I have an autoimmune blood disorder which is triggered by infections and I was hospitalized 5 times in 2010, 5 times in 2011 and twice this year with sepsis and various infections because of my low white count.

The BMT specialist is afraid that a transplant may be too risky if my blood disorder flares up during the process. He says he thinks that I probably do have secondary MDS from two rounds of cytoxan but that it could be AA or hypoplastic MDS and he wants to be sure before he decides on a treatment plan and right now wants to watch and wait and do another BMB in 6 months.

In the meantime every little infection I get turns into a big deal with potential hospitalization.

My last counts were:
HGB 10.4
WBC 1500
ANC 650
PLT 106,000

When I read about all the other treatments they seem to lower the wbc even more so I think this my be why my doctors don't feel these options would be a good alternative for me.

It's frustrating but from what I have been reading on this forum it looks like a lot of people are in a "watch and wait' mode.

Thanks again for your explanations. Something gets lost in the translation when you google some of these scientific terms
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