Retroperitoneal Fibrosis

My brother was told in June has retroperitoneal Fibrosis and the doctors he has been seeing do not seem to know what to do. He is now finally going on Tuesday to Cleveland Clinic but he has over the past three monthis grown very week. He has lost a total of 60 lbs and has desire to eat or drink anything. I have read quite a bit about the rare disease and believe I understand what he is in for. Can anyone tell me if and when treatments start what to expect. My brother and sister-in-law seem to not completely understand what is happening, he is getting weaker by the day and cannot live without pain pills. She on the other hand believes he is just a winer and should be able to help himself. I feel as though I am watching him die before my eyes and no one is helping him. Anything anyone can tell me will be helpful, just having someone to talk to! Thanks! Di