Has Anyone Ever Been On Pomalyst? | MyMyelomaTeam

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Has Anyone Ever Been On Pomalyst?
A MyMyelomaTeam Member asked a question 💭

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.

posted October 19, 2022
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A MyMyelomaTeam Member

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.

posted October 31, 2022
A MyMyelomaTeam Member

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.

posted October 19, 2022
A MyMyelomaTeam Member

Amen👍

posted December 15, 2022
A MyMyelomaTeam Member

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.

posted December 14, 2022
A MyMyelomaTeam Member

I've never had dexamethasone every day. Usually once or twice weekly with the various treatments I have been on 💕

posted December 2, 2022

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