My dad was diagnosed with high risk MDS in February of this year. He began Vidaza and was accepted into the drug study for Pevonedistat. At first his numbers and everything went really well. His hemoglobin jumped back up and he only needed a couple blood transfusions. At 4 months they said he was in remission. But now everything is going backwards. He has chronic fatigue, his neutrophils are bottoming out as low as .02 and his platlettes are dropping to the po8nt of needing transfusions again. But his blasts are still at a low number. We are trying to figure out why everything is going backwards. Is there anyone on this thread that is using PV? Looking for other patients that have been diagnosed high risk to see what your treatments are and how you are doing with them. He has fallen this week due to week legs, is stuck at home due to lack of immune system, has no energy and is not seeing a light at the end of the tunnel. Looking for any thoughts anyone may have.
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