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@kellysg

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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Replies to "I was diagnosed with Carcinoid in 2007. The mass had grown around several loops of my..."

Hello @kellysg and welcome to the NETs discussion group on Mayo Clinic Connect. I appreciate your comments about your journey with NETs and the treatments that you have tried. It sounds like you have been proactive in trying different treatments and keep seeking answers.

I'm sure you are glad that everything has stayed "stable" and nothing new has shown up.

I see that your Chromogranin A (CgA) is higher than usual. As you probably know there are many reasons for this phenomenon. Is your doctor concerned about the rise in CgA levels?

Hi,
My dr has recommended the PRRT treatments. Did you have any side effects from the PRRT?
Thank you!