NET - Insulinoma

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!

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.

Insulinoma causes excessive release of insulin and results in hypoglycemia. My husband is not a candidate for surgery. He has one lesion on his pancreas and innumerable on his liver. OCTREOTIDE is an injection that is supposed to help curb the regrowth of the tumors and suppress insulin. He has been on this since last summer. Last September he did folfox/5 fu chemo treatment and it worked well to reduce the size of his tumors. He had to stop this treatment after 6 months due to severe neuropathy in hands and feet. Also was not eating due to metallic taste and lost a lot of weight. Was doing well until June this year but had hypoglycemia again and scans showed regrowth. His doctor has started CAP/TEM chemo therapy treatments. This sounds like there have been promising results for this type of cancer. He is already noticing lessening of hypoglycemia after one treatment. Wishing you all the best.

Keep us posted! After my first 2 surgeries to remove/ablate a total of 11 insulinomas, the calcium stimulation is actually how I know the tumors are in the pancreas and liver. Unable to visualize on imaging but symptomatic and able to determine they are there with the positive calcium stimulation. Very grateful for the procedure - otherwise, I may still be searching for answers. Best wishes!

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!

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!