Thread: MDS Questions
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  #7  
Old Fri Mar 2, 2018, 12:32 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi rich7,

I concur with the others that now is the time to seek out second opinions with other experts in the field of bone marrow failure and autoimmune disease (not just MDS).

Your counts are good right now. Nothing that you have posted screams MDS. However, a quick google search will tell you that the MLL gene mutation isn't a good one to have. There is something going on, but the doctors probably aren't sure of the diagnosis yet, and there is no standard-of-care for treatment for this mutation. This is the problem with being on the forefront of advance genomic testing - what to do with the information!

I think it would be wise to use this time while you are "stable" to build a team of experts, so that you have direction if things transform.

Be well!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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