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 | Apr 27, 2021
In reply to @preeti "Hello @hopeful33250, sorry, I could not post an update over the last few days. I was..." + (show)
@preeti

Hello @hopeful33250, sorry, I could not post an update over the last few days. I was discharged after 3 nights of hospital stay post surgery. I stayed at my sister’s place in Houston for 2 weeks and now back to home in NJ. I was able to start eating regular food after about a week post surgery. Recovery has been great so far and I am slowly gaining strength back. I continued to reduce taking pain meds and completely stopped after 10 days post surgery. Avoiding lifting heavy things and taking as much care as I could to avoid developing harnia. At some point, I noticed minor discharge at the drain wound and called up after hours number at Mayo. They were great to connect me to my surgeon’s team who were super helpful. They asked me to send a photo of the wound site and after looking at the picture, assured me that it’s healing well. Thanks for checking with me!

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Hi again @preeti

As it has been about a month since your surgery, I just wanted to check in and say hello and see how you are progressing post-sugery.

Will you post an update as you are able?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 6, 2021
In reply to @ahtaylor "Sorry for they delay in response. Getting back and catching up. We are going to try..." + (show)
@ahtaylor

Sorry for they delay in response. Getting back and catching up. We are going to try Victoza which is technically a diabetic drug and appears a little counterintuitive but does help with insulin and glucagon control. There will be close monitoring/communication re: effectiveness once I start the medication. The other alternative was diazoxide which has significant side effects. Thanks for the questions.

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Hello @ahtaylor

In mid-April, you mentioned that you were going to be starting Victoza for your blood sugar problems and there would be close monitoring. I was wondering if you had started that med yet. If so, is it helping with insulin and glucagon control?

I look forward to hearing from you. Will you post an update when it's convenient for you?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 6, 2021
In reply to @preeti "Hello @hopeful33250, sorry, I could not post an update over the last few days. I was..." + (show)
@preeti

Hello @hopeful33250, sorry, I could not post an update over the last few days. I was discharged after 3 nights of hospital stay post surgery. I stayed at my sister’s place in Houston for 2 weeks and now back to home in NJ. I was able to start eating regular food after about a week post surgery. Recovery has been great so far and I am slowly gaining strength back. I continued to reduce taking pain meds and completely stopped after 10 days post surgery. Avoiding lifting heavy things and taking as much care as I could to avoid developing harnia. At some point, I noticed minor discharge at the drain wound and called up after hours number at Mayo. They were great to connect me to my surgeon’s team who were super helpful. They asked me to send a photo of the wound site and after looking at the picture, assured me that it’s healing well. Thanks for checking with me!

Jump to this post

Hello @preeti

I hope you are feeling stronger now. How are you progressing post-sugery? I was wondering if you have surgery follow-up with Mayo by video conference or do you follow up locally with a physician in your area?

Any problems that you care to share? Or better yet, any successes?

I know, so many questions! Will you post an update?

REPLY
1 reply
kapple | @kapple | Jun 6, 2021
In reply to @hopeful33250 "Hello @preeti I hope you are feeling stronger now. How are you progressing post-sugery? I was..." + (show)
@hopeful33250

Hello @preeti

I hope you are feeling stronger now. How are you progressing post-sugery? I was wondering if you have surgery follow-up with Mayo by video conference or do you follow up locally with a physician in your area?

Any problems that you care to share? Or better yet, any successes?

I know, so many questions! Will you post an update?

Jump to this post

hello and I am glad you are healing after surgery I have a small insulinomaDetected by a pet scan and am looking for a Doctor Who specializes with these types of pancreatic tumor’s -may I ask where you got your diagnosis and treatment?

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1 reply
kapple | @kapple | Jun 6, 2021
In reply to @kapple "hello and I am glad you are healing after surgery I have a small insulinomaDetected by..." + (show)
@kapple

hello and I am glad you are healing after surgery I have a small insulinomaDetected by a pet scan and am looking for a Doctor Who specializes with these types of pancreatic tumor’s -may I ask where you got your diagnosis and treatment?

Jump to this post

I live in Southern California and cannot find a specialist who Is experienced as the condition is so rare

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 6, 2021
In reply to @kapple "I live in Southern California and cannot find a specialist who Is experienced as the condition..." + (show)
@kapple

I live in Southern California and cannot find a specialist who Is experienced as the condition is so rare

Jump to this post

Hello @kapple, I would first like to welcome you to Mayo Clinic Connect. I'm glad that you found this online support network where patients give and receive support.

Finding a specialist who treats insulinoma is difficult. You are right that it is rare and you definitely need to see someone who specializes in this disorder. Two Connect members who have recently posted are @preeti and @ahtaylor. If you read their posts you will see that they have both travelled to Mayo Clinic in Rochester, MN for their treatment.

You posted that you were recently diagnosed with a small insulinoma. What symptoms were you having that led your doctor to look into this?

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1 reply
ahtaylor | @ahtaylor | Jun 7, 2021
In reply to @hopeful33250 "Hello @kapple, I would first like to welcome you to Mayo Clinic Connect. I'm glad that..." + (show)
@hopeful33250

Hello @kapple, I would first like to welcome you to Mayo Clinic Connect. I'm glad that you found this online support network where patients give and receive support.

Finding a specialist who treats insulinoma is difficult. You are right that it is rare and you definitely need to see someone who specializes in this disorder. Two Connect members who have recently posted are @preeti and @ahtaylor. If you read their posts you will see that they have both travelled to Mayo Clinic in Rochester, MN for their treatment.

You posted that you were recently diagnosed with a small insulinoma. What symptoms were you having that led your doctor to look into this?

Jump to this post

Teresa,
Thanks for including me in the response.
@kapple - I am more than happy to share my experience. In the short story version - I have been a patient at Mayo Clinic for multiple recurrent insulinomas since 2017. I have a fantastic endocrinologist at Mayo who does specialize in insulinomas. His name is Dr. Adrian Vella. I am so very happy to be a patient at Mayo and know I am in great hands. My case is a bit complicated in that I had 2 insulinomas removed in 2015 in NC and 9 more removed at Mayo in 2017. I have 2 more that are inoperable so I continue to be under Dr. Vella's care for medical management of the insulinomas. I feel blessed to have been connected with Dr. Vella and Mayo Clinic. If there are any questions I can answer, please let me know.

REPLY
2 replies
ahtaylor | @ahtaylor | Jun 7, 2021
In reply to @hopeful33250 "Hello @ahtaylor In mid-April, you mentioned that you were going to be starting Victoza for your..." + (show)
@hopeful33250

Hello @ahtaylor

In mid-April, you mentioned that you were going to be starting Victoza for your blood sugar problems and there would be close monitoring. I was wondering if you had started that med yet. If so, is it helping with insulin and glucagon control?

I look forward to hearing from you. Will you post an update when it's convenient for you?

Jump to this post

I have started the Victoza. While it has not stopped the hypoglycemia episodes, it seemingly has reduced some of the severity of the drops so they are not as symptomatic. This seems to be related to less variation in my blood sugar levels. Trying a dose change to see if it has more of an impact. Thanks for checking.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 7, 2021
In reply to @ahtaylor "Teresa, Thanks for including me in the response. @kapple - I am more than happy to..." + (show)
@ahtaylor

Teresa,
Thanks for including me in the response.
@kapple - I am more than happy to share my experience. In the short story version - I have been a patient at Mayo Clinic for multiple recurrent insulinomas since 2017. I have a fantastic endocrinologist at Mayo who does specialize in insulinomas. His name is Dr. Adrian Vella. I am so very happy to be a patient at Mayo and know I am in great hands. My case is a bit complicated in that I had 2 insulinomas removed in 2015 in NC and 9 more removed at Mayo in 2017. I have 2 more that are inoperable so I continue to be under Dr. Vella's care for medical management of the insulinomas. I feel blessed to have been connected with Dr. Vella and Mayo Clinic. If there are any questions I can answer, please let me know.

Jump to this post

Hello @ahtaylor

Thank you for your response to both my question as well as responding to @kapple. I'm glad to know that the Victoza is providing some relief for your blood sugar drops. Any relief improves the quality of life

@kapple, I would like to point out that both @ahtaylor and @preeti have flown to Mayo in Minnesota as they both live on the East coast as I recall.

REPLY
kapple | @kapple | Jun 7, 2021
In reply to @ahtaylor "Teresa, Thanks for including me in the response. @kapple - I am more than happy to..." + (show)
@ahtaylor

Teresa,
Thanks for including me in the response.
@kapple - I am more than happy to share my experience. In the short story version - I have been a patient at Mayo Clinic for multiple recurrent insulinomas since 2017. I have a fantastic endocrinologist at Mayo who does specialize in insulinomas. His name is Dr. Adrian Vella. I am so very happy to be a patient at Mayo and know I am in great hands. My case is a bit complicated in that I had 2 insulinomas removed in 2015 in NC and 9 more removed at Mayo in 2017. I have 2 more that are inoperable so I continue to be under Dr. Vella's care for medical management of the insulinomas. I feel blessed to have been connected with Dr. Vella and Mayo Clinic. If there are any questions I can answer, please let me know.

Jump to this post

hi hopeful, My blood work was always within range however I suffered from Extreme fatigue and weakness, diabetes like symptoms even including neuropathy -a gallium 68 scan confirmed a small insulinoma which would explain a lot of my issues- I dread the thought of flying to the East Coast due to my condition however I will check into it thank you for the information- I have also heard of John Hopkins that deals with an insulinoma are you familiar with this hospital?

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