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ahtaylor
@ahtaylor

Posts: 25
Joined: Jan 07, 2017

NET - Insulinoma

Posted by @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.

REPLY

@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.

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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.

@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

@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

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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.

@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

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

@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

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Best of luck to you!

@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

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Thanks!

@ahtaylor Please know that we will be thinking about you tomorrow as you have your surgery. When you feel up to it, please let us know how you are feeling. Best wishes, Teresa
Copy to: @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @heidilynn4

@hopeful33250

@ahtaylor Please know that we will be thinking about you tomorrow as you have your surgery. When you feel up to it, please let us know how you are feeling. Best wishes, Teresa
Copy to: @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @heidilynn4

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May the luck of the Irish be with you tomorrow for your surgery on St. Patrick’s day, Allison (@ahtaylor). We’ll be thinking of you.

@hopeful33250

@ahtaylor Please know that we will be thinking about you tomorrow as you have your surgery. When you feel up to it, please let us know how you are feeling. Best wishes, Teresa
Copy to: @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @heidilynn4

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Thanks!

@ahtaylor Thinking about you and I hope that your recovery is coming along well. Drop us a line when you feel up to it! Teresa

Hi @ahtaylor,
How are you doing? Like Teresa, I hope that your recovery post surgery is going well. We look forward to hearing from you when you are able.

Hello,
I have a new diagnosis of an insulinoma after months of hypos in 30’s and 40’s but as low as 25. I live in Colorado but am contemplating going to the Rochester Mayo Clinic for treatment/surgery. The problem is that I don’t even know where to start for a surgeon and unfortunately neither does my Endo. Is anyone able to tell me about experiences or do you have contact info for surgeons that you would highly recommend?
Any help would be greatly appreciated!
Thanks!
Lolorn

Hello @lolorn and welcome to Mayo Connect

While I am sorry to hear of your recent diagnosis of insulinoma I am sure that you must be relieved to have a diagnosis that you can now work with. I am pleased that you are looking for a surgeon who is an expert in this matter. It is important when dealing with any type of NETs that you find the most experienced, accomplished surgeon that is available. Mayo Clinic would be an excellent choice. Here is some additional information about insulinoma from the NIH website, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3087741/

Since you live in Colorado you might also talk with Eric Liu, MD (Surgical Oncology) at The Rocky Mountain Cancer Centers. I am not sure if he treats insulinoma, but I've heard good things about him from other NET patients (who do not have insulinoma) and his office is in Denver. Here is a website with more information about him, https://www.carcinoid.org/doctor/eric-liu-md-surgical-oncology/.

With blood sugar numbers so low, I can imagine how difficult it must be work or carry on a somewhat normal life. How are you limited by your symptoms?

I look forward to hearing from you again as you work through this difficult diagnosis and seek treatment.

Teresa

Has anyone mentioned Dr. Eric Liu, Rocky Mountain Cancer Center to you? He is an expert in NETs and is in Denver.

Hello @debf

Yes, I've heard good things about him – I believe that he has NETs himself and recently had surgery. Here is a link to a website about him, https://www.carcinoid.org/doctor/eric-liu-md-surgical-oncology/. I do not know for sure if he deals with Insulinoma though. It is important to seek out specialists for the specific type of NETs. Mayo is always a good choice.

Teresa

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