@zacharycat
My progression and treatments: diagnosed with Nets stage 4 mets to liver Jan. 2021, well differentiated grade 2. Unknown primary and no symptoms. Started Lanreotide 2/21 and then PRRT (lutetium) June 2021 ending Feb 2022. Excellent results (elimination of some lesions & decrease in size of all), continued with SSA after. Some progression on SSA noted in 6/24 and ended Lanreotide and started Everolimus 5 mg (10 mg normal dose caused lung issues and other side effects). Continued on Everolimus until August. 2025 when scans showed progression. Started a clinical trial at Mayo fall 2025 first on high dose Octreotide and then switched to Alpha PRRT after progression noted in first scan on trial since starting high dose Octreotide with first PRRT treatment in February 2026 and second treatment this next week. So far no problems with Alpha PRRT and will post again after first and later scans.

For me, PRRT was the most effective treatment so far and with manageable side effects of fatigue, hair thinning, some appetite/eating changes. Everolimus was most difficult for side effects--mouth sores, metallic taste, fatigue and lung infection on higher dose. No info/experience on Cabozantinib. I believe there are other clinical trials ongoing with Alpha PRRT, but don't have any info about that.
Karen