Hello Mollie,

Back in 2008 I was diagnosed with carcinoid having a mid-gut primary with liver metastasis. I have been on monthly sandostatin injections since January 2009 and the dosage has changed twice over the 8+ years depending on favorable test results. Years prior to my carcinoid diagnosis I developed heart disease, that is not related to the carcinoid. I understand that over 50% of patients can develop CHD (carcinoid heart disease) but to date I've shown
no manifestation of any heart valve lesions. I have had no surgeries and my treatment has been the sandostatin injections only. The injections have minimized my symptoms and kept the progression of tumor spread at bay.

I can definitely relate to your emotional state as I've been there dealing with carcinoid and heart disease. I do want to offer you words of encouragement though. As Teresa mentioned, there are many of us "noids" living and thriving with this rare disease. Many of us who have passed the 10, 15 and 20 year mark and living productive lives. Yes, I do suffer from symptoms: diarrhea at times but very well controlled, flushing occasionally, abdominal pain now and then and fatigue, but I am doing well.

You've come to a good group for information and support. If I lived near Rochester, the Mayo Clinic is where I would go for treatment. It is my understanding they are a comprehensive cancer center, have cutting-edge technology and offer whole-person care for this rare disease.

Everybody's journey is different and I wanted to share with you mine. I am hopeful for continued health and thankful for support I've received from groups and blogs on this disease.

Please keep in touch.

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