I was diagnosed with Carcinoid in 2007. The mass had grown around several loops of my small intestine. After resection, I have appox. 5 feet left. I was started on Sandostatin, 20 mg, in 2009, and had been getting injections every 28 days. I started getting granulomas at the injection site, meaning the drug was pooling there and not getting absorbed as well as it should be. In March 2022, I started on Lanreotide. So far, so good, but it's cost is significantly higher.

I have also done 4 rounds of PRRT, starting in Feb. of 2020, with subsequent rounds in 2 mo intervals. So far, all of my lesions/tumors have stayed stable, and nothing new has shown up. I scan every 6 mo. This is the first time my Chromogranin A has been out of 'normal' range, at 103. My serotonin has not been in normal range for years, but is now creeping up, at 1370. It was higher before the PRRT treatments.

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