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Pancreatic neuroendocrine insulinoma

Neuroendocrine Tumors (NETs) | Last Active: Sep 20 5:34am | Replies (73)

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@margaret12

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,

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Replies to "I appreciate Your follow up. Unfortunately I was disregarded by the oncologist, the only thing that..."

For both of the 72 hour fasts, the endocrinologist ordered. The first was
done in the hospital in NC. The second was done at Mayo and was started in
the clinic with conversion to hospital if not hypoglycemic by close of
clinic.
Calcium stimulation was another very helpful test- it will confirm presence
or absence of insulinoma and localize to the region of the pancreas as well
as can be done with the liver. The calcium is used to stimulate the tumors
to produce insulin and results are found in the insulin levels that are
drawn every 20 seconds after injection. This is all done through femoral
arterial and venous lines. This procedure was done at Mayo.
Hope this is helpful. I am happy to continue to answer questions as I truly
understand how challenging this can all be!
Take care.

What hospital are you in?