Hi I'm meghan I'm 27 I was diagnosed with desmoid tumors in my lower left calf when I was 25. I've done so much research and I've tried 3 different drugs. I started with surgery and dr. Removed to tumor wrong. It spread through calf and caused 4 tumors to grow back in the matter of 2 months. 15cm being the largest. I then had 3 more surgeries and 8 tumors removed. I had surgery every three months. In the mean time I tried Gleevec for 6 months and that didnt work then I tried hydroxyurea for 2 month that was pointless. I then tried nexavar it has kept my tumors stable I have 7 right now. I've been on been on nexavar for a year and a half . 6 months on two pills and a year on one pill. I have very little side effects. Just a pink face but makeup helps. I also dropped 15lbs and I'm tiny to begin with. I also decided to not do radiation. I started seeing a natural path and changed my diet and take lots of supplements that help keep tumors at bay. I cut out red meat, sugar, soy, all dairy, and try to eat very clean. Dr.S At md Anderson don't want me to have children but I just got married in August and we want children badly! I'm determined to get rid of these!