NET and neuropathy

Posted by jingjingjing @jingjingjing, Jul 29 8:52am

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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Turkey, Volunteer Mentor | @tomrennie | Jul 30 12:14pm

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?

tstern7 | @tstern7 | Jul 31 12:33pm

Hi! I have both. Diagnosed at Stanford. My first surgery was in 2007. When they operate on the pancreas via open surgery, as in my case, they cut through the entire body. My neuropathy began the following year, in 2008. They call the pancreas “God’s country” for a reason. It took several years to get properly diagnosed and I wasted a lot of time on the wrong pain medications. I Recommend a pain management specialist. In the US, we don’t have many, but it’s worth it because no one can be effective or have a good quality of life if one is constantly suffering in pain.