1. < Neuroendocrine Tumors (NETs)

NET - Insulinoma

Posted by ahtaylor @ahtaylor, Jan 21, 2017

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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 27, 2017

@ahtaylor That kind of drop in blood sugar must have been very frightening.

REPLY
ahtaylor | @ahtaylor | Jan 28, 2017

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

REPLY
3 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 28, 2017
In reply to @ahtaylor "No doubt. They gave me D50 after my fast and it spiked and then dropped to..." + (show)
@ahtaylor

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

Jump to this post

@ahtaylor I'm sorry to hear of the two new insulinomas, even though you are probably not surprised given the symptoms. Are Illinoisans always located in the pancreas (and is that why they affect blood sugar)?

REPLY
ahtaylor | @ahtaylor | Jan 28, 2017

Yes they are in the pancreas unless they metastasize but are generally benign and don't metastasize. The tumors themselves produce insulin and cause the hypoglycemia. Normal insulin production is regulated in a feedback loop so it does not overproduce.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 8, 2017
In reply to @ahtaylor "No doubt. They gave me D50 after my fast and it spiked and then dropped to..." + (show)
@ahtaylor

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

Jump to this post

@ahtaylor Hi, its been a while since we last heard from you. I am under the impression that you will be having surgery in the near future. Has a surgery date been set yet? Keep in touch with us as you are able. Teresa

REPLY
ahtaylor | @ahtaylor | Feb 8, 2017
In reply to @ahtaylor "No doubt. They gave me D50 after my fast and it spiked and then dropped to..." + (show)
@ahtaylor

No doubt. They gave me D50 after my fast and it spiked and then dropped to 20. Fortunately a nurse was in the room with me at the time as the drop happened so fast that I was not alert or aware enough to call for help. They treated again with glucagon and D50 and the same occurred with a drop to 25. After the 3 round of medication they put me on a continuous dextrose drip until it stabilized.
On a related note, I am flying back from Mayo today. After a week of testing, they found 2 additional insulinomas. Will be spending some quality time at Mayo in the near future.

Jump to this post

Thanks for asking!  I am coming back to Mayo the week of 3/13. I will be having more testing that week to better localize the tumors and then surgery at the end of the week. Take care.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 12, 2017

@ahtaylor As I see from your previous post in February, you were planning on going back to Mayo this week. Is that still the plan? Has your surgery been scheduled for this week? Please keep us posted. I will be praying for you to have good results. Teresa

REPLY
4 replies
ahtaylor | @ahtaylor | Mar 12, 2017
In reply to @hopeful33250 "@ahtaylor As I see from your previous post in February, you were planning on going back..." + (show)
@hopeful33250

@ahtaylor As I see from your previous post in February, you were planning on going back to Mayo this week. Is that still the plan? Has your surgery been scheduled for this week? Please keep us posted. I will be praying for you to have good results. Teresa

Jump to this post

Thank you for the post. We have just arrived back in Rochester. I have testing for the first part of this week, surgery consult on Thursday and surgery is scheduled for Friday 3/17. Thanks for the thoughts and prayers.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 12, 2017
In reply to @hopeful33250 "@ahtaylor As I see from your previous post in February, you were planning on going back..." + (show)
@hopeful33250

@ahtaylor As I see from your previous post in February, you were planning on going back to Mayo this week. Is that still the plan? Has your surgery been scheduled for this week? Please keep us posted. I will be praying for you to have good results. Teresa

Jump to this post

@ahtaylor Thanks for the update, Allison. Keep us posted. Teresa

REPLY
gaylejean | @gaylejean | Mar 12, 2017
In reply to @hopeful33250 "@ahtaylor As I see from your previous post in February, you were planning on going back..." + (show)
@hopeful33250

@ahtaylor As I see from your previous post in February, you were planning on going back to Mayo this week. Is that still the plan? Has your surgery been scheduled for this week? Please keep us posted. I will be praying for you to have good results. Teresa

Jump to this post

Best of luck to you!

REPLY
View MoreView Less
Please sign in or register to post a reply.