[BeccaBoo]

They just put my high risk MDS Dad on 2 new meds, Neupogen and Luspatercept, and I'm freaking out, again. He went through 8 rounds of Vidaza and then added 2 rounds of Venetaclax, which disabled him entirely, I was freaking out, quit my job, moved back in, he needed 24 hour care, and it landed him in the hospital with neutropenic fever. Zero benefit, only harm. Now he's off the chemo, doing 90% better as far as quality of life goes, and now... these new meds. I can't wrap my head around it. I looked up neupogen for MDS, and not only is there no proven benefit for treating MDS... all I could find was a warning that is actually CAUSES MDS and AML! Why would they prescribe something for MDS that causes MDS? It can also speed up cancer and tumor growth along with many other risks. I look up Luspatercept, and find little information about MDS, only minimal debated info for low risk MDS, and info saying it has had zero benefit for high risk MDS, and a slew of risks come with it. The chemo was meant to destroy proteins. These new meds are meant to build proteins. They say it's only meant to do one thing, and that is to boost his counts and help lower the number of transfusions he needs. Since he stopped the chemo his counts have been all steadily going in the right directions. He hasn't had a single infection. His white count more than tripled! I can't find any studies showing this is what it will do! All I am finding is info saying it either doesn't help or they don't know, and they are still studying it. Has anyone had any experience with these before? Anyone had any good results? Or bad results? I just can't find anything that gives me any hope this is going to be helpful. I'm terrified they are just using my Dad to experiment on and are feeding him cocktails that have no studies to back it up. It appears he is the study!