I'm feeling happy, that's for sure. I had asked how can you tell the difference between carcinoid syndrome and the side effects from the sandostatin and no one had a clear answer for me. At the time that I was put on sandostatin, I was still so sick and weak from my extensive surgery, I couldn't put 2 and 2 together. I can honestly say that the diarrhea has improved greatly, so the tumors must have been causing that problem and the sandostatin the rest. I feel very fortunate that I was put on sandostatin so soon after my surgery. Others that I know were not and their liver mets - well to many to count.

@joannem, No surgery yet, but I've been on Sandostatin for close to 8 years and never experienced any side effects except soreness at the injection site. Thanks for sharing the good news concerning your latest test results. I'm sure it is relieving to know that you are stable and all is working in your favor. I am cheering from the sidelines.

@joannem I'm glad to hear that the sandostatin has worked so well for you. You mentioned having "extensive surgery." Would you mind sharing what type of surgery you had and/or the location of the carcinoids? If you are comfortable sharing this information it might be of help to the rest of us, Zebras!

Hi- the extensive surgery I had was a right hemicolotomy. I which takes out all of your ascending bowel, 1/3 of your transverse bowel, 6 inches of small bowel, appendix, illium cecum and any other parts in that area. also a small part of my duodenum and some more small bowel and 27 lymph nodes. doc said it started in appendix and grew from there. I was diagnosed with crohns disease for 15 years prior to this. so many of us with carcinoid are misdiagnosed with crohns, colitis, irritable bowel. I questioned crohns when I was diagnosed cause it didn't quite fit. I didn't pursue my questions because several members were diagnosed with crohns. O scans showed a tumor in liver and tumor in right kidney. now my oscans show no tumors after 2 years on sandostation

@joannem Thanks for sharing some more of your story. That is good news that your Oscans are showing no tumors after 2 years of treatment. You must be very pleased. The stories people tell of how their carcinoids were diagnosed is always interesting. Doctors usually discover them when they are looking for something else. Thanks again for being part of our Mayo Connect community!