Pancreatic neuroendocrine insulinoma

Posted by links @links, Jan 19 12:04pm

Looking to connect with anyone who has an insulinoma. My tumor presents in the pancrease. I currently have chemotherapy bi weekly since July 2022. This is a rare combination and have struggled with regulating my sugars and hoping to meet someone else with a similar diagnosis.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Greetings! Thanks for the post. I am happy to connect with you. I have been dealing with insulinomas since 2014. I have had 11 removed/ablated in 2 different surgeries – a modified whipple and a distal pancreatectomy and splenectomy. I still have at least 2 left in my pancreas and being monitored for metastasis to the liver. I am currently on long acting Octreotide – IM injections every 4 weeks to keep my blood sugars under control. This is the second time I have done octreotide injections. I had an anaphylactic reaction the first time and had to go through desensitization because hypoglycemia episodes had escalated to the point I could no longer go without some type of treatment and had not tolerated other treatments due to allergic reactions. I started the short-acting in December and converted to the long acting this week. So far so good 🙂
I would be interested in hearing more about your treatment regimen and more than happy to answer any additional questions you have. Thanks again for your post!

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I am so grateful for your response to my post,and the possible connection that we may have with our stories.I have been under chemotherapy since July,2022.I was receiving 5FU infusions biweekly combined with 5mg daily of everolimous,but we had to stop the everolimous about 3 months ago because of some reactions and the infusions are far more important.
I have had 2 scans to date,both showing disease control and some shrinkage.The most pressing issue along the way is managing and dealing with the sugar levels. I do wear a Dexcom system to try and manage day and night.Oddly they found adding cornstarch to any liquid,like tea helps the levels. I am not on injections(yet).I know the net combination with the insulinoma is rare,but I am encouraged to hear that you have been managing for some time!
For me having a connection is important and hope you might feel the same…hearing positive responses,encouraging news and developing treatments is great!
I live in the Boston area,not sure where you are located.
I am interested to hear more of your story and happy to share mine.
I look forward to hearing from you…wherever you are located,there is another strong supporter right here!!
My best
Marlene
Happy to share my number if you would like!

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