← Return to NET - Insulinoma

Discussion

NET - Insulinoma

Neuroendocrine Tumors (NETs) | Last Active: Nov 11, 2023 | Replies (210)

Comment receiving replies
@beth71

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.

Jump to this post


Replies to "Was an insulinoma the cause for his hypoglycemia? I have not researched on Octreotide much. Was..."

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.

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.