I am still waiting to be accepted into the Lutate program at RBWH. The program Director has been on sick leave for 7 weeks. I may do the Study trial of LX 1606 (telotristat etiprate)which suppresses the symtoms of Carcinoid Syndrome. I still have 3 weekly injections of Lanreotide. First week I am almost symptom free, then 2nd week just average, then 3rd week symptoms return (flushing and severe itching caused by Histamine emissions from the neuro-endocrine tumors in the liver) However I thank God I am still alive and fairly well after 2 and a half years. Occasionally I have a bad day consisting of flu like symptoms; fever, joint pains, diarrhea and extreme weakness. The next day I am quickly recovered.
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