NET - Insulinoma

Great Info. I am so sorry to hear of your reoccurrences and now mets to the liver. I have been told that it will be like 1.5-2 weeks before the complete analysis of the test will be complete. Apparently a couple of the test they order are send-outs and they are utilized with their analysis. The Endo and Int. Rad Team at Vandy take all results for specimens (approx. 60) taken during test from various arteries and veins (including send-outs) and plot them on a spreadsheet by source and time. Once all results received, then they interpret the test. The Int Rad MD said he also tests the Rt Hepatic artery for liver to check for cancerous cells as they have the same Calcium/Insulin response. I just hope I get some answers that can be treated in some manner as you know frequent hypoglycemic events is a miserable state.

Thanks again for the info and support!

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.

Welcome to the group! Insulinoma diagnosis can be tricky. In brief, I was diagnosed in 2015 and it took around a year to get to the diagnosis. My first endocrinologist, after a long consultation, stated “you are not really hypoglycemic” and wanted to refer me to a neurologist. After driving with my 2 small kids (at that time) and not knowing where I was and a glucometer reading of 34, I got a second opinion. My PCP set up both endocrinology referrals. After a year of various testing, the second endocrinologist set me up for a 72 hour fast which is one of the better diagnostic tests. My blood sugar dropped around hour 38 and my labs pointed to an insulinoma. An endoscopic ultrasound revealed 2 and I had a modified Whipple in 2015. In 2017, I was referred to Mayo after hypoglycemia persisted and increased in frequency and severity. Prior to the referral - 2 MRIs and and endoscopic ultrasound did not reveal any additional insulinomas. However, after a week of extensive testing at Mayo, 4 more were found and an additional 5 were found during my surgery at Mayo. A month later the hypoglycemia recurred and after additional testing - Only through a test called a calcium stimulation test - have we discovered there are additional insulinomas in my pancreas and as of April 2023, my liver. None of them show up on imaging. All that to say, finding/diagnosing insulinomas is not always simple.
A couple of thoughts - Have you tried a different endocrinologist? What testing other than a CT has been done? I could talk all day on this topic and would love to be of any assistance I can 🙂
I truly understand the frustration! Continue to be your husband’s advocate! Continue to seek out the care you feel he needs, until you have answers you need! Please let me know if there is any additional information you feel would be helpful or if you would like to connect in conversation. I am happy to do so.
Best wishes in this journey - keep fighting!

Hoping all is going well for you. My husband is in the middle of his 4th Cap/Tem treatment and seems the best he has been in 18 months. Tumors are shrinking and very little side effects. His tumors on his liver were found by a surgeon doing hernia surgery. He said there were lesions all over his liver and sent him in for an MRI. Not sure as I am not a medical professional but the MRI seems better at finding the lesions than the ct. Your story is encouraging as he was originally told he wouldn’t last 6 months. We are 18 months in and the doctor is now looking ahead a year. No Mayo’s near us. We are at Dana Farber and very happy with our treatment for such a rare cancer. Keep up the fight as we are.

Always keeping the fight! Glad to hear you have a great experience at Dana Farber. Being comfortable and confident in your care team is certainly an important part of the battle. Both my oncologist and endocrinologist have told me MRI is a better imaging specifically for the liver (vs. CT). Good to hear the outlook is getting more positive. 9 years since my original diagnosis and 6 months since the liver mets for me - still doing very well, hypoglycemia is reasonably controlled with medication and feeling good 🙂
On 2nd round of Sandostatin (LAR) since the beginning of the year. Severe allergic reaction on the first round and had to do an allergy desensitization so I could take it again - as it was the medication that worked the best at controlling the hypoglycemia. Recently have found gallbladder distention and common bile duct dilation on a CT and MRI that is attributed to the Sandostatin. Not having significant or consistent symptoms though - so just monitoring liver enzymes and for symptoms for now.

Does anyone else on Sandostatin long term have experience with gallbladder issues? I know it is one of the risks with Sandostatin . . . . Just curious what others had experienced.

Best wishes in your journey!

My husband started Losartan last week after being off all BP meds since diagnosis in 2022. From day one we have noticed significantly lower morning blood sugars(70’s vs 100) has anyone else seen this? He is currently on cap/tem treatment 5th round.

Hello @bnjcrew,

Your post has been moved this discussion group where other NET patients are discussing blood sugar problems. I would like to invite @ahtaylor to post with you as well.

Have you discussed this change in blood sugars with your doctor? I'd be interested to hear if the doctor thinks that change in blood sugar might be related to taking the Losartan.