[Marixyz]

Hello Everyone - I haven't been on in a very long time. My dad was diagnosed with the MDS in September of 06. He had every available treatment on the market - you name it, he tried it. Inevitably, the MDS progressed to AML last summer, and he again tried various forms of chemotherapy. Because his blood was always so low, he lived on weekly blood transfusions for most of that time. My dad died on May 3, 2009 and the cause of death was MDS which lead to AML. Now from what I have had to learn the hard way, there is no cure for MDS and it will inevitably lead to AML. My dad didn't get three full years, but to be honest, the years he got weren't good ones. He was tired all of the time and could barely walk from the bedroom to the bathroom without having to rest for oxygen because the RBC was so depleted. He spent 95% of his waking day in bed, sleeping or watching tv. I guess the good news is that he never had any real bad pain with these diseases, only fatigue and listlessness. Towards the end, the bruising was really bad on his arms, he did get a dose of shingles which is common for these blood diseases back around the time he was diagnosed with AML, which they had to wait for the shingles to clear before they could treat the AML. The chemo for the AML was even worse than the disease. Back when the doctor diagnosed my dad with MDS, he told us it was a blood disorder "nothing serious". He lied. MDS progresses into AML and all chemotherapy can do is slow that progression - and the quality of life pretty much stinks for them. My dad was also a very lively 74 year old upon being diagnosed, but the next nearly 3 years of his life he was a shell of himself, requiring assistance 24/7. He could feed himself and he could manage, with help, to get back and forth to the bathroom. My mom pretty much wore herself out taking care of my dad, and all of us helped as we could, which was limited because we really just wanted him to be well. Do your homework with this because it is an aggressive, progressive and life threatening disease ultimately. Don't let anyone tell you, like the doctor who told us, MDS is nothing serious. Until there is a cure or hope for remission, which I now feel there is nothing available to put these diseases into remission whatsoever, do your homework and learn as much as you can about it, because my father fought hard to stay alive. He wasn't really living, and now he is gone, and I'm pretty upset as you can most likely decipher from reading this email. It's a fight, but the leukemia (AML) wins and once that is the diagnosis, it really doesn't waste any time.