Nov 23, 2009 - 9:33 pm
I was diagnosed with carcinoid cancer 11/2007. I had been having symptoms for years, but no one could figure out what was wrong. Finally on Thanksgiving Day I went to the ER where they ran yet more tests. That's when they finally found the tumor. They removed the tumor along with 80% of my small intestine. The tumor had grown around several loops of my intestines and basically squeezed it shut so nothing could pass through. My oncologist said it had probably been growing undetected for years and is a very slow growing cancer, and rare. We continue to monitor with scans and lab work. Although all margins were clear, the cancer is still wandering around in me somewhere. He likened it to "little seeds floating around looking for each other". So far they haven't been able to find each other. I was started on Sandostatin LAR, 20mg in May and it has helped with carcinoid syndrome. However, in the past month, I have lost weight without changing my diet or exercise regimen. I eat all the time, and intentionally go for the desserts/candy/junk food. My muscles are sore for no reason, and I feel tired by the end of the afternoon. Is there anyone taking monthly injections of Sandostatin and experiencing any of these symptoms? I'd love to hear from you. I have my next appointment with my oncologist in December and will ask him about it. Happy Thanksgiving!