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Old Tue Nov 28, 2017, 12:32 AM
DanL DanL is offline
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Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Brian,

I am not sure what your doctor is referring to as normal with the cytogenetic abnormalities that you have listed.

Generally speaking 3 or more abnormalities is considered a complex karyotype, which means that they get bundled together, rather than being reviewed individually.

The unique part of your case is the hypo-cellular marrow. About 85% MDS patients fall into the normo-cellular or hyper-cellular categories. With hypo-cellular MDS, there seems to be a crossover in treatment for AA and hypo-mds, primarily the use of immune suppression, especially for relatively younger patients.

I am not a doctor, just a long-term mds patient. The relevant part of all of this is 1) are you responding to treatment? or 2) are you experiencing progressively lower blood counts, higher blasts, or lower quality of life.

The only currently known cure for MDS is a stem-cell or bone marrow transplant. That being stated, there are several people on the forums that have lived with MDS and treatments for several years before needing to proceed to transplant.

As for the second opinion, I believe that almost everybody here would agree that a second opinion, especially from an MDS center of excellence, would be a great idea. MDS is a difficult disease and you need to be comfortable and confident in your treatment path.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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