Is anyone taking cabozantinib (Cabometyx)?

Posted by elainedanielle @elainedanielle, 18 hours ago

I was dx with small bowel NET, met to the liver in 2018 (Carcinoid subset). Surgery removed the large primary tumor & some lymph nodes. Too many tumors in the liver by then to consider surgery so it's been ongoing variety of treatments to keep the tumors from progressing. Monthly Octreotide inj eventually failed; the Everolimus eventually failed, Lutathera PRRT in 2023 was effective almost 2 years to the day. MRI in Jan 2026 revealed a significant new growth in a short period. Next-- docs want me to start Cabometyx in the next couple weeks. Side effects look very weird & scary--the most potential side effects than any of my former treatments. I've been to UNC Chapel Hill, Duke and Emory U and all concur. Next on the list is PRRT Alpha, once cleared by FDA. So----is anyone on Cabometyx?

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