Pancreatic NETs: Looking to connect with anyone with insulinoma

I have metastatic insulinoma. Mets to the liver. PRRT has not been part of my treatment plan. Currently my treatment plan is monthly injections of Sandostatin LAR. Hepatic artery embolization has been discussed as a future treatment as the tumors progress. Glad to hear he is doing well!

Administration,
Can these posts get a little more organized? Getting hard to follow conversations posts are all over the place

Bob,
To provide some additional information. . . I have had 2 surgeries - a modified whipple in NC in 2015 and a distal pancreatectomy/splenectomy in 2017 at Mayo - in those two surgeries, there were 11 total tumors that were either removed or ablated. After the second surgery in 2017, hypoglycemia persisted, and it was discovered through a Calcium Stimulation test that there was at least one if not more tumors still in the pancreas. Up until 11/2022, the tumor(s) could not be seen on imaging due to small size. There are 2 very small areas (5mm or smaller) now visible on CT that are possible insulinomas in the pancreas, as well as a couple of areas on the liver that are indeterminate but possible insulinomas. Due to their size, location and the extensive previous surgeries, the pancreatic tumors are currently deemed inoperable. Chemo and radiation have not been part of the plan of care due to the size of the tumors and the inability to monitor if the tumors are shrinking. Thankfully, the desensitization to the octreotide is helping keep significant allergic reactions from occurring and the medication is quite effective in creating a significant decrease in hypoglycemia episodes. I continue to go to Mayo clinic every 6 months and the care is excellent. I feel in very good hands in Rochester. Wishing you the best in your continued journey. Hope to hear from you soon. Take care!

I appreciate Your follow up. Unfortunately I was disregarded by the oncologist, the only thing that was offered are iron infusions and that is despite elevated 5 HIAA and glucagon and Pancreastatin in the past. The one said he would never order Pancreastatin. I said, they were done and they are elevated, shouldn't we do something about it? I also have hypoglycemia 30min -1 hour after eating. All my fasting glucose is fine but I wasn't able to fast for more then 16 hrs. I have asked continuously for 72hr fast, including the oncologist today and it was denied. My liver has close if not over 20 tumors that I being disregarded as cysts. Bile ducts in and out of liver are enlarging and beyond EUS nothing was done. No Neuroendocrine clinic will take me without liver biopsy and doctors refuse to do one. I have increasing GI issues and exhaustion beyond the point of managing this illness. Who ordered 72hr fast for You? Was it done at the hospital? Thank you,

I appreciate Your follow up. Unfortunately I was disregarded by the oncologist, the only thing that was offered are iron infusions and that is despite elevated 5 HIAA and glucagon and Pancreastatin in the past. The one said he would never order Pancreastatin. I said, they were done and they are elevated, shouldn't we do something about it? I also have hypoglycemia 30min -1 hour after eating. All my fasting glucose is fine but I wasn't able to fast for more then 16 hrs. I have asked continuously for 72hr fast, including the oncologist today and it was denied. My liver has close if not over 20 tumors that I being disregarded as cysts. Bile ducts in and out of liver are enlarging and beyond EUS nothing was done. No Neuroendocrine clinic will take me without liver biopsy and doctors refuse to do one. I have increasing GI issues and exhaustion beyond the point of managing this illness. Who ordered 72hr fast for You? Was it done at the hospital? Thank you,