Caregiver for husband with MDS/AA overlap
I've been reading the posts on here for about 1 1/2 years but haven't posted yet. Kinda shy and afraid I'll leave something important out. My husband is 65 years old, diagnosed with high-risk MDS 9/2016 after having bouts of high fevers at nighttime, fatigue for several months, and an internal bleed from an ulcer. He's had 3 BMB, genetic testing (JAK2 and CBL mutations). Had 4 months of Vidaza without success, had 23 weeks of Procrit/Aranesp without success, was hospitalized for 6 days for the ATG/cyclosporine/prednisone treatments. White count is hanging around low normal, platelets were around 20,000 and as of April they had climbed to 100,000. His hemoglobin rarely goes above 7.6. To complicate things, he has AA too. So, other than his platelets getting better, there hasn't seemed to be any improvement with all the treatments. His last transfusion was 8 weeks ago.
He's hanging in there, able to do his desk job at home, but does become very fatigued and short of breath with much exertion.
All that to say, this is a very tiring and worrisome disease. Wondering if anyone else has this complicated and often debilitating MDS/AA overlap syndrome? Sometimes I just need to ask questions about it--it's all so confusing.