Midostaurin for Acute Myeloid Leukemia User Reviews
Brand names: Rydapt
- Lilac
- Taken for 6 months to 1 year
- August 20, 2023
"I was diagnosed with AML with the FLT3 mutation back in Dec. 2022 and have done 2 rounds of midostaurin (once with my induction treatment and once with my consolidation treatment). I am now post stem-cell transplant and currently taking it again for my maintenance therapy (supposedly for one year). I wasn't able to take the full dose during my induction due to high liver enzymes but that wasn't related to the midostaurin but rather to the chemo. I did get some hand and finger rashes from the midostaurin during that initial treatment. I did have some days of severe nausea but I discovered that if I was able to eat a substantial amount (a full meal) about an hour or so before taking the midostaurin, my nausea was greatly minimized. For my consolidation doses of midostaurin, they did prescribe Kytril (an anti-nausea) to be taken an hour prior to taking the midostaurin. I think that worked well for me. My main side effect was the nausea. We'll see how maintenance therapy goes..."
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"I was put on mitostaurin for a FLT3 mutation in my AML leukemia. I was on lorazepam and phenegran as pre meds to stop vomiting, but that was a joke. I was literally so sick, projectile vomiting neon colors, I felt like I was in a horror movie. I honestly called my nurse and told her I was thought it was the end of my life! Then I was able to *barely* tolerate it by sitting upright, completely still, and adding marijuana edibles with pre meds. I had to stay completely still for 2 hours each time, and I still would throw up 60% of the time. I was doped-up out of it, and 100% miserable. It did get rid of my FLT3 though which is the only reason I gave it 3 instead of 1 star. I honestly tolerated chemo a million times better than this. I'm 27 years old, started taking it at 26. Now I've had my bone marrow transplant, my doctor wants me back on this stuff as a preventive measure. I'm 90% sure I'm going to refuse."