I am a carcinoid patient as of 5/09/07 . I would recommend you see or talk with Dr. Richard R. P. Warner. He is the know all, be all, guru on carcinoid. He works at Mount Sinia Hosp. in NYC. He has made carcinoid his life's work. I have been getting advised by him from day 1. He was working out of his own office untill he started working at Mt. Sinia Hosp. in January '08. He is now teaching the subject. There is also a Symposium scheduled on April 13, 2008. I would look up Susan Anderson's website. most informative. it will direct you to some great info. I would also look up Dr. Mickail Shafir also of Mt. Sinia Hosp. He did my surgery. Briliant man! He works with Dr. Warner. You deffinitley want someone who knows carcinoid thoroughly. There are many little details that you need to learn about this cancer. Does your husband take Sandostatin to suppress the serratonin levels? You didn't mention this. I also see a cardiologist Dr. Jerome Zacks in NYC. He is very informative on the effects carcinoid can have on your heart. In fact I am seeing him today.
I too was on the xeloda and also temador but to no avail. My original tumor was in the Cecum of the large intestine. It Metastesised on my liver where I had a Radio Frequency Ablation. but it had a few tumors peppered in. My recent 1/08 CT showed it grew and multiplied. So I need to go on Folfox/Avastin but I have to get the Insurance to approve it still. They keep Denying it.
I hope this helps you. It is very important that you get someone who understands all the complexities of this condition. It is very scary and confusing but you need to arm yourself with lots of info. The more you know, the better you can communicate with your doctor.
Good Luck, God Bless! Katsen57