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Joan
I'm so interested to see your story and that your husband was diagnosed with secondary MDS in 2006 and is still walking a mile a day. My hubby was diagnosed, secondary, this past March/May and all I've been hearing is all the doom and gloom about secondary MDS. He, also, had NHL . . . starting in 2001 with recurrances and chemos and radiation and surgeries etc., etc., until his stem cell transplant (auto) in 2008. I know that both the chemos for the NHL and the stem cell transplant contributed to the MDS, but your story is sure encouraging. Jens is younger than your husband, but has a number of other issues, and chromosome damage with the MDS. Did your husband ever have the Vidaza (or other chemo/treatment), or has it been just the Aranesp? Is it just his red cells affected or are the WBCs and/or platelets also affected? Jens also sleeps 10-12 hours/night (sometimes more) and usually naps a couple of hours during the day. I'm interested in hearing more of your story.
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hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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