I have bad kidney disease. Started Ogsiveo 12/28/2023. Dehydration almost killed me at 300mg per day. I take 100mg per day four days per week. None on Tuesday, Thursday or Saturday. That is all I can tolerate. It is dehydrating. I find I need to drink between 80 to 100 ounces per day of non caffeine or alcoholic drinks. Those are a bit dehydrating. I weigh about 140 lbs. Rule of hydration one ounce of fluids for every two pounds of body weight just when there is no problems. Drink more if you go on it. Contact Springworks. You might get the medicine for nothing. Good luck. Contact me if you want. I try to help whenever I can. You can ask me anything but keep in mind I have to be careful with answers. I do have a medical degree but I am NOT a doctor nor do I pretend to be. Food is medicine and medicine is food.

Stopped Ogsiveo March 2026. It didn't help me probably because I have so many health problems. My kidneys declined and my immune system was horrible while on it. Doctors finally agreed with me that I had had enough. I'm feeling better. Not great but better. Kidneys are a slightly better. Only time will tell if I can get more improvement. I have heard that Ogsiveo has helped some but keep in mind that we are talking about desmoids. They take on a life of their own. Did Ogsiveo help or is it just Desmoids being desmoids? You tell me 😊 Only the Desmoid knows for sure.

I agree with you 100%!

Do or have you had any side effects from the ogsiveo? And if so which ones?
My doctors have been trying to get me to take it since the diagnosis, just so scared of the effects.

I tried it for about a week. I have weak kidneys and it didn't help me. I do know of someone who used it along with something else for lung cancer. He said that it helped. I'm on Ogsiveo. Is it helping? Don't know. Maybe. Maybe not. Desmoids are crazy animals with minds of their own. Stick with real fresh food when in season, frozen when not and packaged as last resort. Stay away from fast food, junk food and high carb food. Tumors love sugar. Tell your family They are not doctoral scientists. What do they know specifically about desmoids. Do they know about beta catenin cell formation. Do they know anything about the Wnt process. If not let the experts do their job. They don't understand the genetics of the crazy syndrome. Most things don't work with this condition. Ivermectin might work for some cancer but not for this . Good luck