Hi, Mark,
I was diagnosed in 2007 with a carcinoid tumor that had wrapped around several loops of my small intestine. They removed the tumor and resected what they could. Several lymph nodes were involved at that time. I started on monthly injections of Sandostatin, 20 mg in 2009 and tolerated that well. The cancer has spread over the years, with mets in my pelvis, liver, and most recently my right clavicle and scapula. All of these are small nodules and lesions with the exception of a mass on my liver. In 2019, Pet scan revealed new nodules and growth so that is when we decided to do 4 treatments of PRRT. My first one was Feb. 2020 and the only side effect I had was very minimal fatigue. With each treatment after, the fatigue increased, and I experienced hair thinning, but thankfully no nausea. Scans after the 4 treatments revealed stable mets, with no new growth.
In 2020, I switched from Sandostatin to Lanreotide. The Sandostatin was causing granulomas, which are knots at the injection site so the meds weren't being absorbed as well as they used to. I experienced more diarhhea as my body adjusted to the new meds, and have just started on Zenpep to help with malabsorption. The Zenpep is extremely cost prohibitive, and at the suggestion of my pharmacist, I contacted the Zenpep manufacturer directly and applied for their Patient Assistance Program. I just found out this morning that I qualify and can get the drug for $0000! Cost from the pharmacy was quoted at $4300/mo.

My last scans in January, 2023 show everything is stable, but my counts continue to rise. My serotonin went from 654 after PRRT to 1370 so something is going on. I have requested an appointment with Mayo and am still in the review process. I should know something from them the first of next week, fingers crossed!

I hope I haven't overloaded you with too much info, but wanted you to know the history...