Midostaurin User Reviews & Ratings

• Masto...
• Taken for 1 to 2 years
• June 9, 2019

Rydapt (midostaurin) for Systemic Mastocytosis "I have a love/hate relationship with Rydapt which I take for aggressive systemic mastocytosis (ASM). A year ago, we thought I had months to live. Well, I am still here and doing much better. I had lost 160 lbs in 6 months, my mast cells were out of control in most parts of my digestive system and bone marrow and I had the rash’s, twitching and every other ailment that goes with ASM. I started Rydapt and things improved, I gained the weight I needed to gain back and the ASM has been responding very well. HOWEVER... this drug has caused a panic in me, twice a day! I cannot stop vomiting, it has progressively gotten worse and is now damaging my stomach. However, I still rate this drug a 7, for all of the positive effects it has had!"

• Nikki
• Taken for 1 to 6 months
• November 19, 2019

For Acute Myeloid Leukemia "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."

• Lilac
• Taken for 6 months to 1 year
• August 20, 2023

For Acute Myeloid Leukemia "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..."

• AndrewD
• Taken for 6 months to 1 year
• March 5, 2018

For Systemic Mastocytosis "Midostaurin reduced my fairly severe symptoms within just 3 weeks and has continued to improve both the key measures of Systemic Mastocytosis and also quality of life. I now have better than half of every day symptom free with something approaching a 'normal' quality of life."

• harose
• Taken for 6 months to 1 year
• May 19, 2017

Rydapt (midostaurin) for Systemic Mastocytosis "We have been in a single clinical trial and it has improved the quality of life by 50 % in the last 6 months , after having systemic mastocytosis (smc) for 20 years."