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DiscussionPancreatic NETs: Looking to connect with anyone with insulinoma
Neuroendocrine Tumors (NETs) | Last Active: Mar 21 4:18pm | Replies (86)Comment receiving replies
Replies to "Thank you for posting their links. I starting experiencing periodic hypoglycemia about a year and a..."
My husband has had the insulinoma metastasized to liver since 2022. He also couldn’t do the diazoxide but is able to do octreotide. Everolimus also works well . Try cornstarch mixed in some bouillon or pudding it helps stabilize sugars for a longer period. Our best to you.
@jasonrex86 I was taking diazoxide, but it wasn't helping much and it caused fluid retention. My endocrinologist said it was a band-aid at best.
My meter would also go low toward morning. Frankly after a while I ignored it as wasn't needing much energy at 4 AM anyway. Probably a bad idea but I got sick of being woke up in the hospital by techs poking my finger and then nurses telling me to drink fruit juice so they could measure it again in 15 mins.
@jasonrex86 I have not done RFA but I have had a hepatic artery embolization to treat the liver tumors. I was able to get 18 months of significant relief from hypoglycemia - averaging about 1-3 episodes a month. I continue to get monthly octreotide injections as well. The hypoglycemia is starting to increase again - now averaging an episode about every 1-3 days. Keeping in communication with my endocrinologist at Mayo for next steps. Wishing you the best!
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Sorry for the delay in responding. Where are things today? Any changes? I have a pancreatic NET that has spread to my liver. I found out on 8/22. My only option then, and now, is chemo. But, I am ok living that way.