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Hi, Fordad,
Not a rude question at all - we are all on here looking for answers and hope but also looking for what to realistically expect for the worst case scenario especially in cases where there are very limited treatment options. Unfortunately, my dad passed away in November of 2015 about 20 months after his initial diagnosis. Given how poor his original prognosis was and how low his response to Vidaza was, he did very well and was pretty comfortable until the last couple of months.
He also had a lot of weight loss and low appetite in the first couple of months of treatment. He complained that Vidaza made salty foods incredibly salty and sweet foods unbearably sweet. It took a fair amount of experimenting, but we eventually found foods that tasted okay and found a number of snacks that required no preparation that he could have on hand. Eating a few smaller meals during the day rather than three larger ones worked for him. He also liked Boost (a liquid supplement like Ensure) that really helped keep his nutrition up when he wasn't eating well.
I'm hoping you get good news when you get the results of his BMB. My dad's numbers were always very low (hgb around 8, WBC around 1, platelets anywhere between 10 and 40, bone marrow blasts 18%) but I do believe that continued treatment did kind of keep things from progressing for a good year. Hope this helps, and I'll be wishing you all the best!
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