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Pancreatic NETs: Looking to connect with anyone with insulinoma
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.
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@hopeful33250 thank you. I cannot exercise. Any minor exertion,I start sweating and blurred vision. BS drops to the 30s. Have been mis diagnosed for over 10 years saying it was heat intolerance from MS or menopause.
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1 Reaction@sunflower1398 My first diagnosis was handled in NC - they were great! However, not al tumors were removed and shortly after my whipple I had recurrence of hypoglycemia. Around a year later my hypoglycemia persisted and with no identification of tumors with EUS and MRI I was referred to Mayo. Mayo identified 9 more tumors and I had a distal pancreatectomy and splectomy. Again, within months I had recurrence of hypoglycemia. Insulinomas are good at hiding from imaging and are tricky to manage at times. My primary endocrinologist referred me to Mayo and that was how I was able to secure advanced care for insulinomas. My recommendation would be a second opinion if you are not comfortable with the initial opinion. Whipple is generally curative if insulinomas are not metastatic. Whipple is a very difficult procedure. For me, mine were metastatic, so it complicated my case. Please let me know how I can assist. I am more than happy to connect further to share my experiences.
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1 ReactionHello @sunflower1398, and welcome to the NETs support group on Mayo Clinic Connect. You are wise to be seeking a second opinion. I highly recommend obtaining a second opinion from a NET specialist. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with NET specialists in the U.S.; https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/
General oncologists aren't as well-versed in the latest treatments for rare cancers such as this one. I would also like to invite @ahtaylor to post with you. She has experience with insulinoma and has been actively involved in her treatment.
How do you feel when you exercise and have hypoglycemic episodes?
@sunflower1398
I would recommend getting multiple opinions. Most places won’t hesitate to see you especially after you tell them you already have a diagnosed insulinoma. You could also ask your current doctor/surgeon if they would suggest someone if you want a second opinion. I live near NYC and traveled halfway across the country to Mayo Clinic in Rochester. I highly recommend Dr Michael Kendrick. He performs the whipped laparoscopically and robotically. My insulinoma was also on the head of the pancreas. Best of luck to you, if you have any questions feel free to reach out.
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3 Reactions@jasonrex86 I have not done RFA but I have had a hepatic artery embolization to treat the liver tumors. I was able to get 18 months of significant relief from hypoglycemia - averaging about 1-3 episodes a month. I continue to get monthly octreotide injections as well. The hypoglycemia is starting to increase again - now averaging an episode about every 1-3 days. Keeping in communication with my endocrinologist at Mayo for next steps. Wishing you the best!
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1 Reaction@jasonrex86 I was taking diazoxide, but it wasn't helping much and it caused fluid retention. My endocrinologist said it was a band-aid at best.
My meter would also go low toward morning. Frankly after a while I ignored it as wasn't needing much energy at 4 AM anyway. Probably a bad idea but I got sick of being woke up in the hospital by techs poking my finger and then nurses telling me to drink fruit juice so they could measure it again in 15 mins.
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1 Reaction@hopeful33250
Based on weight I should be taking 60 mg. That's a high dose to tolerate though, and the doctors started me out on 40 mg, probably to see if that would be effective. So far it's working (8 months) but I have to be realistic, as half the people in the pNET study (49 of 99) are no longer with us. My oncologist said he was "hoping for a couple years" and that was last summer.
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2 Reactions@jasonrex86 I had distal pancreatectomy, gall bladder and spleen along with RFA in 2025.
After RFA the PET scan showed increased uptake in the liver, but the surgeon explained that this was normal and would decrease. The next scan was better and showed no significant uptake (I also started cabometyx between the scans).
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1 ReactionHypoglycemia when doing phyical activity. C-peptide and insulin high. Had ct scan. Told I have a benign insulinoma on pancreas head. All other organs appear normal. Surgeon suggested Whipple procedure. Terrifird! Mri and pet scan scheduled. How do I get second options from a high volume hospitals? Hoping for enucleation or ablasion. Thanks for any info.
For all who are interested in learning about a new treatment for pNET, here is a link to an article from the FDA website that introduces a newly approved drug:
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-cabozantinib-adults-and-pediatric-patients-12-years-age-and-older-pnet-and-epnet