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Not alone
Hi Joe,
Thank you for sharing your story, and I am very sorry for your loss.
My husband is the one with MDS and I am his caregiver. He is a non-Hodgkins Lymphoma survivor: diagnosed 2001 (stage IV, at 60), autologous stem cell transplant in 2008 so the MDS is, as in your father's case, secondary and harder to treat. His is Refractory Cytopenia with Multilineage Dysplasia, ring sideroblasts, and is positive for 7q deletion/monosomy 7. He did not tolerate the Vidaza, was only able to have 3 injections, and is now getting along with a Neulasta injection every two weeks. He is not transfusion dependent . . . yet. We know this won't last forever, so we are enjoying the good days. He is almost a year since the diagnosis. Sometimes just being able to "talk" about it with people who understand is a relief and a blessing . . . so few have ever heard of MDS.
Thanks for sharing, and for listening
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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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