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terrapin99's Recent CancerCompass Activity

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About terrapin99

Survivor
Other Cancer
Cancer Nutrition, Cancer Treatments, Clinical Trials and Research, Emotional Support, Surgery

My name is Mark and I was diagnosed in May of 2010 with carcinoid cancer of the small intestine. I have been treated with 30 mg, long acting sandostatin injections every 4 weeks. On August 25th, I underwent surgery at OHSU with Dr. Pommier where the primary tumor was removed, 55 metastatic tumors were removed from my liver, a lymph node was resectioned and my gall bladder was removed. To date, I've had no symptoms of carcinoid syndrome and, really, have had no symptoms other than some discomfort in my upper right abdomen that led me to initiate treatment at Kaiser Permanente which led to a CT scan, liver biopsy, and all the rest.

Update: The mets in my liver returned in July of 2011. Since Sandostatin was ineffective at suppressing the tumor. I began a clinical trial with an oral chemo drug, everolimus, in October 2012. It appears to be suppressing the tumors but it has come with side effects. I've controlled mouth sores with an oral rinse. My blood pressure has reached levels that may require treatment. Most troubling, I've developed inflammation in my lungs, pneumanitis. I stopped taking everolimus today and have an appointment scheduled with a pulmonologist. I hope to restart the trial soon.

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