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Pancreatic neuroendocrine insulinoma

Neuroendocrine Tumors (NETs) | Last Active: 6 days ago | Replies (52)

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@ahtaylor

Welcome and thanks, Margaret for the questions! To respond to your questions:

My PET/CTs have been with dotate. I have not had one with the contrast you mentioned.

I don't have confirmed liver mets, the areas on my liver are being monitored for possible metastasis. However, for the most part they have been stable to very slow enlargement over time.

I utilize glucose tablets primarily to bring my blood sugar back up. Occasionally, I will also need OJ in addition to the glucose tablets. My hypoglycemia mostly occurs after meals (within 30-45 minutes) and with exercise. Only occasionally do I have fasting hypoglycemia. The presentation made my diagnosis a bit more challenging as it is not a common presentation of insulinomas.

I have done the 72 hour fast a couple of times for diagnostic purposes and then some modified fasts as well as mixed meal tests for evaluation of the behavior of the tumors after they were confirmed to be present. The first one I had that was diagnostic, my blood sugar dropped into the 40s at about 40 hours. Do you have particular questions about the 72 hour fast? My confirmed insulinomas have all been functional.

Have you ever done a Calcium Stimulation test? Are you a current Mayo patient or considering care at Mayo? Looking foward to hearing more from you and thanks again for sending the message! Take care!

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Replies to "Welcome and thanks, Margaret for the questions! To respond to your questions: My PET/CTs have been..."

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,