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Old Mon Feb 12, 2018, 07:05 AM
Sue&Dave Sue&Dave is offline
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Join Date: Nov 2016
Location: New York
Posts: 50
Hi Allank - My husband was 58 when he was dxd in March 2015 with low risk MDS RAEB-1. He was on W&W for a year when we decided to go ahead with a transplant while he as was in good health. He had no match, so we were going to do a haplo / cord blood as part of a clinical trial. Ironically he was scheduled to start conditioning treatment the day he was admitted to the hospital for a subdural hematoma (brain bleed), which may or may not have been related to his MDS. 2016 wasn't a great year for him as he endured 3 separate brain surgeries and 2 months of IV antibiotics. His doc wanted him to start on Vidaza since all 3 of his counts had been drifting downward as he dealt with the brain issues, but also wanted him off the antibiotics for 6 months before he started treatment. By January 2017 he was so weak we had no choice but to start on the Vidaza. He just finished round 13 (we doubled up one month early on at the suggestion of his doc); and we couldn't be more pleased with the results. These past 2 years have been so important to us, making us realize how short and precious life really is. Up until then I had been hoarding my sick and vacation time in order to be there for him when he will eventually need to go to transplant. But during this time I also saw how sick he really can get, and of course how exhausting being a caregiver is. We are fortunate enough to have made the decision for me to only work part time to spend as much quality time together as possible. We are now focusing on bucket list things while we can. So, while this disease is a monster, we have chosen to look at it as a small gift that allowed us to understand how short life can be and live it accordingly. Best to you as you start your treatment.
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