Has anyone ever been on Pomalyst? If so, can you tell me about your experience on it. I'm having a hard time with the side effects and could use some insights.
Hi Donna,
I also take 2 mg, 21 days on and 7 days off. I'm into my 3rd month of it. They had to take me off it for 2 weeks at one point because of my bloodwork.
Then put back on every other day for a week, then back to 2 mg.
I tolerated the every other day regime ok. If my M-Spike goes down to .3 they are going to drop me down to 1 mg per day.
Ron's on it but hasn't experienced side effects particular to it so far as we can tell. He's got jitters (internal and in hands) and neuropathy in a couple toes, but we can't be sure which medication could be causing them. He finished RVD (9 cycles) in July and transitioned to pomalyst, darzalex and continued with dexamethasone.
Amen👍
I went to a MM specialist and I liked what he said about side effects. He said, “Side effects should not be a badge of honor. There are so many options.” I’m done just blindly doing what my oncologist says. If I’m in remission with negative MRD, then I don’t want treatment, I want quality of life.
I've never had dexamethasone every day. Usually once or twice weekly with the various treatments I have been on 💕