Pancreatic neuroendocrine insulinoma

Hello, I am curious if anyone here has been treated with the PRRT for metastatic insulinoma. My husband is completing his 4th round tomorrow and I am curious if any follow-up treatment has been offered after this. He is doing quite well by the way.

I have metastatic insulinoma. Mets to the liver. PRRT has not been part of my treatment plan. Currently my treatment plan is monthly injections of Sandostatin LAR. Hepatic artery embolization has been discussed as a future treatment as the tumors progress. Glad to hear he is doing well!

My husband started with emboliztion but I have read that PRRT is being considered as a primary treatment for nets now. He also has monthly injections- octreotide. My Best to you!

I have the same problem as you and always have low blood sugar syndrome. I tried to live with insulinoma with frequent meals and so on. Anyone to share with me what is your treatment if I don't want the surgery?

I have the same problem in my pancreas

Thanks for your sharing and gave me comments

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

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?

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.

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