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. ... View more

I was diagnosed with Carcinoid Syndrome in February 2012. My symptoms then were severe flushing and severe itching. I have had Liver ablation-partially succesful,Liver biopsy and am on Lanreotide 120 mg every three weeks. Greenslopes Hospital in Brisbane have been very helpful. I now await possible GA Dotatate treatment at the Royal Brisbane Hospital Nuclear medicine dept. Apart from flushing and itching I keep well. I am trying a sugar free and carbohydrate free diet at present hoping it may help. ... View more