[tbauer]

Hello I'll try to sum up my story quickly. 36yo female diagnosed 6yrs ago with carcinoid tumor (primary was underneath my rectum) has now metastasized all within my pelvic area now 5 tumors. Have had 3 unsuccessful surgeries and now the tumor is entwined in the nerves/blood vessels to my legs therefore cannot be resected otherwise paralysis of my legs. I've been on sandostatin for 5yrs. I am A-symptomatic and always have been with the exception of anal pain every once in a great while. My oncologist has now started me on 5mg of Afinitor which is making me EXTREMELY fatigued and major rash all over. Any input on your experience would be greatful. I stopped taking it without telling my doctor until days later but he said I need to get back on it. This is no lifestyle for someone like me who's extremely active. Any input is appreciated! Thank you.