NET and neuropathy

Posted by jingjingjing @jingjingjing, 2 days ago

20 months after NET found in small intestine and already spread to liver. I have had resection, monthly octreotide injections, and Lutathera. The cancer seemed to be stable in recent PET scans. Now a new set of symptoms has appeared: full- body neuropathy-like tingling and loss of muscle control. Are the two conditions related? We can’t find it listed in articles.

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Turkey, Volunteer Mentor | @tomrennie | 23 hours ago

Hi @jingjingjing and welcome to Mayo Connect. I have a pnet that spread to my liver. I have been on capecitabine for 3 years and also took temozolomide the first year. I have neuropathy but nothing like you describe. Mine is in my hand and feet and are most likely due to the meds and previous injuries. Seems like your treatment has come in stages. Take your best guess. When did you first notice it? What do you attribute it too? Did you tell anyone on your care team?