Powered By
I have an intramuscular desmoid tumour in my abdomen. It’s growing rapidly. I start nirogacestat next week and I am really afraid about the impact it will have. I am already incredibly fatigued and it only gets worse yet my oncologist tells me my fatigue has nothing to do with the tumour. I find this hard to believe. I struggle to function at work at times and I am a barrister. I’m really scared as a single mother of a three year old with no financial or practical support. I would really like to… read more
So I was on it for two years and everyone is different. I was tired quite often, but once you get used to it and tell yourself go do what you want to you can make it happen. Just might take a little extra effort at first but becomes pretty much normal.
What does life feel like taking nirogacestat and are the side effects manageable?
Your fatigue concerns are valid. Desmoid tumors can absolutely cause fatigue, especially rapidly growing ones in the abdomen. They use oxygen and nutrients your body needs, and can press on organs like blood vessels, kidneys, or intestines Show Full Answer
I just finished about 20 months of Ogsiveo. Luckily had minimal physical side effects. No issues w eating or drinking.
Praying for you My Love
I literally thought i wrote this. Mine is in my mesentery and is 30cm now encasing the main vein and smv branches as well as displacing my colon and now touching my abdominal wall.. I was put on nirogacestat I didnt notice more fatigue that any of the other meds they tried me on. But I am always tired. . . . I have 4 kids. . Between 3 and 5 I get almost like a wave come over me of fatigue extreme tho. . . I call it my mid day burnout. I wasnt able to stay on nirogacestat long but I hear it has good reviews. It caused me to break out in abcesses. But I have HS and hadn't had an issue since my hysterectomy and it reactivated it I guess. I was switched to nexavar but its not working and am starting chemo soon.
Join
Your Privacy Choices
