Pancreatic NETs: Looking to connect with anyone with insulinoma

You could try cornstarch mixed in boullion before bed or my husband liked it in pudding. His sugars are stable now but he was on everolimus for several months and that kept him stable also.

It is. You need to add oat meal or whole grain toast to make it last.

This morning I had low blood sugar syndrome again from driving. I have to stop driving n eat first. I already ate a peach n one avocado and some milk around 7am but I have low blood sugar syndrome around 8:44 am

It is very frustrating

Surgery is scary but my quality if life is poor. Lack of energy and I can't do alot. I have to eat in the middle of the night. I have also gained alot of weight. Once they take it out I should be cured. The chance of cancer or recurrence is 10% if the get clean margins. I am looking at either a distal pancreatectomy or a central pancreatectomy to remove the tumor. They will decide once they go in

I'm so happy to meet you all having the same tumor here. I'm not brave to take the whipple surgery. I would love to hear your stories to share your treatments, thanks a lot

I have the same situation as you from low blood sugar. I tried to find other options beside surgery. Now I also eat carbs every 2 -4 hours to keep myself alive. That also makes me gain a lot of weight. My tumor is on the head of pancreas 1.1 cm. It doesn't grow at all these 2 years .... I diagnosed in 2022 August

I have had blood sugar issues on and off for 2 to 3 years. 6 months again I started getting moments of confusion and weakness. I then went incoherent and an ambulance was called my blood sugar was in the 30s. I was then given a Glucose Monitor and have been diagnosed with an insulinoma in the neck of my pancreas. This is the only location.

Hello @margiefein and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum, it is a great place to receive encouragement and support.

You wrote the "If it has spread..." and I'm wondering if you have had a previous diagnosis of a NET in another location or if this is your first NET diagnosis? I would like to invite @ahtaylor to this discussion since she also has a history with insulinoma and many different treatments, including surgery.

From what you say, it sounds as if your blood glucose is affected by this condition. How long ago was this condition diagnosed?

If it has spread the treatment listed to the only option. If it is a single insulinoma surgery is the best option. With time the symptoms will get worst and can cause black outs and coma if not managed. I have to eat carbs every 2 to 4 hours around the clock to stay alive. My surgery is in a week to remove it. There is a support group on Facebook just for insulinomas patients and is full of information. They have three groups one for suspected, one for diagnosed and one for multiple or metastatic

Thanks for your sharing and gave me comments