[BeccaBoo]

I guess I'm hoping to find other people who have taken these and what their results were, because I cannot find anything. Yes, I take Dad to all his appointments. I am his full time caregiver too. I do not trust his doctor, the oncologist, at all. She has abandoned him 3 times now, and I found out she has a home in Greece she goes to as she pleases. It's as if she is given a script to read, and she downplays all side effects and belittles our questions. When I asked her about the side effects for luspatercept she literally said "Oh well, small things, like you shouldn't breast feed while taking this". She and my Dad had a laugh, and I was livid. When Dad started chemo all she said was "he may be tired and get constipated". She was in complete denial that any of the side effects my father was having from chemo was from the chemo. She kept circling back and saying it was his disease. She said she'd know if the Vidaza was working within 2 cycles, and kept him on for 8. Venetaclax, she said she said she'd know in 1 cycle, and kept him on for 2. Everything I learned let me know this was extremely irresponsible. Even after it had zero positive effect after all that time, and it landed him in the hospital, she STILL suggested he stay on them, just at all lower dose. Thank goodness he said no!! With these new meds, I've so far learned that they should be seeing results within the first 1-2 weeks (10 day median). I know why they suggested them, and I know everyone I ask is going to tell me the same thing. Talk to his oncologist if I have concerns. It's always the same answers. These new meds are in hopes to bring his red and white count up so he is less transfusion dependent. The venetaclax made his white count tank. It's tripled since he stopped, but not because of the new medication. He just started the Neupogen yesterday, and I had no time to research it. It was brought up for the first time, and administered, yesterday, when went in for a regular blood draw. We had not heard of it or discussed it with the oncologist. He did not even know the oncologist had ordered it. Oncologist mentioned Luspartercept when we saw her last week, and we told her we wanted to research it first. I had about 15 minutes to research Neupogen on my phone while my Dad was in the transfusion chair before they gave it to him. We were both confused, but he wanted to go for it. Search "Neupogen for MDS" and the first thing that came up was that is caused MDS, and I still have found nothing saying it treats it. I went home to dig more and can't find anything, and certainly nothing good. Just that it may lower hospitalization days during severe neutropenia for some people. My father says "Yes" to everything his doctor suggests. My Dad did make an appointment for a 2nd opion about 3 weeks ago, while his oncologist was in Greece. That oncologist was awesome!!! He was so honest, thorough, and said everything, straight up, no beating around the bush. He said the chemo was doing absolutely nothing but harming him, and he didn't have anything else to suggest my Dad take. That was before these new meds were prescribed so we had no chance to bring it up. I wonder what he would say.... but my Dad doesn't want to bother making an appointment to ask him. The truth is, my father seems to feel better about everything when he is taking something. He feels like he is doing something, anything, everything he can about it. There has been no discussion about these medications being for trials, but they obviously are, and I know long ago my Dad said he was willing to be in trials. (I actually believe I found the exact Venetaclax trial he was in, 3rd phase, which included the antibiotic and antiviral he was on, specifically for high risk MDS patients who failed Vidaza). It just hasn't been mentioned. I support him all the way, even though I don't agree, even though I totally do not trust or even like his doctor, but I think it is foolish to blindly take drugs without understanding how likely they are to help, or harm. I just want to know what to look out for mostly. I am his full time caregiver now. After going through what we did with the venetaclax and vidaza, I am convinced no one is really looking out for him except his family. The transfusion people aren't supposed to suggest anything, but I could tell, even they were confused why nothing was being addressed as his health tanked so badly he became wheelchair bound and lost 100 pounds. They all just assumed it was the disease.... Oh boy. I'm terrified they are going to kill him in this process of playing with numbers for their study. Dad is an engineer and a gambler though, it's understood, he is going to keep trying.