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My wonderful sister is cecfire, she is my strength through this nightmare. My husband, her brother-in-law,l was diagnoised with MDS on 10/15/2010, 8 days before our daughters wedding. We were told he was In subgroup REAB-1 intermediate-high with blasts of 7-9%. His platelets were low, 10 and under ad he had a platelet transfusion twice before the wedding. His red and white counts are also low and his has had 3 red blood transfusions since his diagnoisis. After the wedding we found a doctor in NYC that specializes in MDS and we his was to begin a clinical trial of vidasa and vironstat a week ago today. However, after a second bmb on 11/9 which moved him into RAEB-2 with blasts now at 18% he developed a fever and has been hospitalized since 11/13. They have run a million of tests and cannot find the source of the infection. He also is experiencing liver issues with very high enzymes, increasing every day. He has had a platelet transfusions every day but one since we have seen here. Platelets can't seem to get over 10,000. In addition the fever remains although over the past 5 days he gets a few hours where he is normal.
I am so frustrated because we have not begun any treatment and I'm so afraid he is progressing with the disease and we are waisting precious time trying to find this needle in the haystack. My gut keeps telling me this has to be MDS and let's get going but I'm not the medical doctors. In the meantime my husband is suffering and he is miserable and it breaks my heart.
Does anyone have any advise or been through this?
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Husband, age 60, healthy, diagnosed Oct.15, 2010 with MDS, RAEB-1, blasts 7%. 3 weeks later new bmb shows blasts 18%, RAEB-2. Hospitalized for the last 10 days with fever and treatment has not begun. Scared.
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