Anyone else on super-aggressive maintenance for MM, post-ASCT?

Posted by meg1685 @meg1685, Sep 30, 2025

Here's my background -
I have ultra-high-risk MM (three mutations) and am 7 months post-ASCT. Post-transplant tests showed negative MRD, or complete remission. My doctor (Johns Hopkins) admitted that he was very surprised to see that, given my stage 3 diagnosis and mutations, etc. So far, I'm one of those people who really responds to the treatments given and I hope to continue that way. I'm 56 and I don't have any other comorbidities.

My maintenance regime is really agressive, though. I'm on Pomalyst, Kyprolis, Darzalex, Zometa once a month, and additional dose of Kyprolis bi-weekly. My Hopkins doctor extrapolated from trials, etc to come up with this regime.

I definitely feel the effects from the drugs - the side effects are worse than they were pre-transplant, although my general state of health is a million times better. I get a 101º F or so fever in the evening of every single treatment day (thank goodness for ibuprofen), plus nausea (thank goodness for Zofran), and the following day, I am almost unable to stay awake. The third and fourth days I always push myself to get busy, go to work, etc but it is rough. I find I have to eat tiny meals frequently or else I feel faint, dizzy, nauseated. I always feel better on the 5th or 6th day but find I still have to carry on with regular small meals and snacks (I was never like this before, didn't even used to eat breakfast!).

Does this sound familiar to anyone? The fabulous nurses (at Kaiser Permanente) don't really have any advice because I'm the only MM patient most of them have known so far on this super aggressive level of maintenance. Some of them think I'll get used to it, and I can tell some think I will get to a point of intolerance but they don't want to come out and say it. Two very different viewpoints!

I did talk to my Kaiser Permanente oncologist about this. I was on steroids to minimize the side effects but they have their own effects, and we agreed it's better not to take them if I can stand it.

I'd love to hear your perspective if you're in sort of the same boat as I am!!

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