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NET - Insulinoma
Hello to All,
I am joining this group from the Diabetes/Endocrine group. In July 2015 I was diagnosed with 2 insulinomas - both removed surgically at DUMC in NC. The diagnostic work-up included a 5 day hospital stay (72 hour fast + complications) and the surgery was an 11 day hospital stay (typical stay for a Whipple procedure). About 3 months post surgery, I started having recurrent hypoglycemia symptoms very similar to my pre-op symptoms. Insulinomas are very difficult to diagnose and locate and so far they have not been able to locate a new tumor but do suspect there is regrowth of an old tumor or growth of a new one. That is what will bring me to Mayo next week. Anyone been through insulinoma testing at Mayo? Hopeful to be starting down a path to possibly find a resolution of daily hypoglycemia symptoms but nervous because I have walked down this path once already. Glad to see the new group on NETs. Thanks.
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In partial response to one of your latter questions. I am on Octreotide or Sandostatin as a monthly injection. I have only used post-op for remaining insulinomas in the pancreas that are now inoperable (after 2 surgeries), as well as insulinomas that have metastasized to the liver. Dose started at 20mg and has been increased to 30mg to provide better control of the hypoglycemia episodes. It is used for symptom control/inhibition of tumor growth and determined by your physician as to when and how to use it based on your specific case. I have used both short acting as well as the monthly injections and use short acting as needed if breakthrough hypoglycemia becomes persistent. I have not done CAP/TEM treatments.
Good luck with your procedure on August 7th - I hope it goes well. I have done it a total of 5 times since 2017. Fortunately, I have not ever had any issues - just have to get through the 4 hours of laying flat. Will you get your results the day of the procedure? Best wishes.
Was an insulinoma the cause for his hypoglycemia? I have not researched on Octreotide much. Was this ordered pre-op or post-op as applicable? I am not familiar with the terms CAP/TEM treatments. What do these entail? Are these used for post-op management or for management for those who are NOT surgical candidates?
Many thanks for your reply and support.
It definitely is.... I too experience fasting and post prandial hypoglycemia every day. My SACST is scheduled now for Aug 7th at Vandy. Will keep you posted.
Many thanks for the support! It's great to communicate with a couple of folks with these very rare issues.
One of the first things they did for my husband was to put him on OCTREOTIDE injections. This didn't “cure” the hypoglycemia but did help. He is currently seeing improvements since starting CAP/TEM treatments. My best to you.
No sandbag required - at least not in the ones I have had done.
I have hypoglycemia both after meals and at time of fasting during the day and at night.
I understand the readiness for answers - it is a difficult wait!
Keep us posted and best wishes. If I can answer any other questions, don’t hesitate to ask!
Take care!
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1 ReactionThank you so much for your reply and the article. From literature review, I deducted that this procedure would be performed like a typical heart cath with a similar recovery. I too will struggle with the lying flat for 4 hours as well. Did they place a sandbag at the site as well?
I am just anxious for some answers. My blood glucose readings and trends are insane and are wearing on my body tremendously. Did you have hypoglycemic events during the night or just after meals?
I have a phone consult with Interventional Radiology in the AM and hope to receive a date for testing as well.
Kind regards.
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1 ReactionGood luck with all of your testing! Above is an article from Mayo that was shared with me when I first had the procedure. I have done the calcium stimulation test several times for diagnosis, diagnosis of recurrence in the pancreas and diagnosis of metastasis to the liver. There is conscious sedation involved- at least with mine. The hardest part of the procedure to me is laying flat for 4 hours after the removal of the arterial line that is used. Happy to answer any questions you have. Best wishes!
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1 ReactionI am currently awaiting to complete my workup for an insulinoma vs Non-Insulinoma Pancreatic Hypoglycemia Syndrome (NIPHS or Nesioblastosis) at Vanderbilt Medical Center. I definitely looked into Mayo and read many of their published research articles, but opted for Vanderbilt due to proximity to my home state of Arkansas.
Unfortunately, I can empathize with your husband as I have to eat pudding with cornstarch to help keep my blood sugar up thru the night as well. It use to keep my blood sugar in range until 0530 or so, but I am starting to drop around 0130 or 0200 again. During the day, my blood sugar abruptly peaks with intake (of any kind) and quickly plummets. Feel like I am eating ALL day to keep my blood sugar within range. After many months of this, I am about tired of eating.
My last procedure in diagnostic protocol is the Selective Arterial Calcium Stimulation Test with Hepatic Venous Sampling. Does anyone on this thread have any feedback regarding this procedure?
Prayers for strength and positive vibes for all!
Beth
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2 ReactionsHello,
My husband also has insulinoma. Pancreas metastasized to liver. We have found that a tablespoon of cornstarch (mixed with a bit of water) and added to pudding or chicken bouillon. I helps to get through the night. He still needs a small bottle of cranberry juice about midnight. We are just starting CAPTEM treatment and hoping for good results. Sending prayers and hugs to you and your husband.
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2 ReactionsThanks! I sent you a private message with my contact information.