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Anyone with an insulinoma have only therapies instead of surgery?

Neuroendocrine Tumors (NETs) | Last Active: Aug 14, 2023 | Replies (21)
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Hi
I was diagnosed with a malignant insulinoma last July. The tumor originated in my pancreas and lesions in my liver....no surgery. I started on 5FU foflox combined with Everolimus. I had a reaction to the combination so they took me off the Everolimus but said possibly will add that later on. I have had the 5U infusions since last July and my tumors are stale. The insulinoma was very difficult to control at first with numbers dropping and dealing with that. I wear a Decom system so I can monitor. My numbers have been stable since my tumors have been.
I found a number of tricks to help the numbers....if you are interested or in need of my list please reach out..happy to share.!

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Replies to "Hi I was diagnosed with a malignant insulinoma last July. The tumor originated in my pancreas..."
briea | @briea | Jul 31, 2023

I would love a list of tricks for helping with the numbers. I only just started Everolimus so it hasn't been long enough for anything to get "stable" .

Right now I have a libre 2 on my arm that alarms when it goes too low and I keep honey, glucose pills, glucose gel and the inhaler (for emergencies because I have gone unconscious a few times from low blood sugar) next to my bed for when my numbers tank.

I have had to get used to a new diet because I've always hated sugar and sweet stuff and the only carb I liked was potatoes so it's been a huge change, and any help is nice because this is all really new.

I have started to keep a journal to see which foods do certain things, but it's hard to see if it's my medicine or what I'm eating honestly.

Thank you for any help and for sharing your story.

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