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 | Mar 17, 2021

Hello @preeti
I just wanted to check in with you to see how you are doing. I hope you continue to gain strength and are able to eat more.
Have you been given a date for discharge from the hospital?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 25, 2021
In reply to @hopeful33250 "Hello @preeti I just wanted to check in with you to see how you are doing...." + (show)
@hopeful33250

Hello @preeti
I just wanted to check in with you to see how you are doing. I hope you continue to gain strength and are able to eat more.
Have you been given a date for discharge from the hospital?

Jump to this post

Hello @preeti

As you have not posted since the day after your surgery I wanted to touch base with you again. I'm wondering if you are still in the hospital and/or still in the Rochester, Minnesota area.
Will you post an update when you can?

REPLY
preeti | @preeti | Mar 28, 2021

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!

REPLY
5 replies
ahtaylor | @ahtaylor | Mar 28, 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

Great to hear! Keep getting better and take care!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 29, 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

Glad to hear that good report, @preeti! Thanks for checking in.

REPLY
ahtaylor | @ahtaylor | Apr 10, 2021
In reply to @ahtaylor "A quick update for the group as I don't think I have posted one in a..." + (show)
@ahtaylor

A quick update for the group as I don't think I have posted one in a while. My insulinoma journey continues. . . I will be turning to Mayo the first week in April for the continued search insulinoma(s) that have been identified in a Calcium Stimulation test but continue to hide from view in imaging. A full week of testing this time for a more aggressive approach to try to locate the tumor(s). The plan includes Dotatate PET/CT, supervised fast, Calcium Stimulation test and a visit with Dr. Vella (endocrinologist) and Dr. MacKenzie (surgeon). After a fairly severe hypoglycemia episode in November 2019, I started Lanreotide (Somatostatin analog) to assist with the hypoglycemia. After 8 months, I had an allergic reaction to the medication. After taking a couple of months off any medication, I was started on a second medication in the same drug class (Octreotide) and after 5 months had a severe allergic reaction. Needless to say, I am no longer on medication for the hypoglycemia. I am eagerly but anxiously anticipating my upcoming appointments. The plan is to see if the tumor(s) that has been hiding since my surgery in 2017 can be found as well as to see if there is any metastasis outside the pancreas and when/if found if there are surgical options. Certainly has been a journey and the journey continues! So glad to have Mayo Clinic as part of the journey - the care is outstanding and I know I am in great hands!

Jump to this post

I have just returned from my week at Mayo so I wanted to post a quick update for the group. The best news of the week is that we confirmed there is NO metastasis of the insulinomas to the liver. The only downside to the week is that the pancreas is still positive for at least one or more insulinoma tumors. After an endoscopic ultrasound the tumors are not visible for the purpose of ablation of the tumors. We met with the surgeon after the endoscopic ultrasound. Essentially we have 3 options: 1) medical management 2) ablation of the tumors via endoscopic ultrasound 3) total pancreatectomy (strongly not recommended). Since the tumors were not visible by EUS, we are really only left with medical management of the remaining tumor(s). A little disappointing there is not a "fix" at the end of all the procedures but I am very happy there is no metastasis. We are going to try and new medication to see if it helps. The journey does continue. . .

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 11, 2021

@ahtaylor
I so appreciate your update. I feel with you both in the relief of "no metastasis" but I also share with you in your disappointment that there is currently "no fix" for your problem. I applaud your determination as you journey towards a cure and/or treatment.

If you are comfortable sharing more, could I ask what new med you are trying? Is the med being used to alleviate the symptoms of the blood sugar problem?

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 11, 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

Hi @preeti
I've been thinking about you and wondering how you are doing. I hope your recovery is still going smoothly.

Will you be returning to Mayo for a post-op appointment or will the follow-up be done by video?

I would enjoy hearing from you when you are able.

REPLY
ahtaylor | @ahtaylor | Apr 14, 2021
In reply to @hopeful33250 "@ahtaylor I so appreciate your update. I feel with you both in the relief of "no..." + (show)
@hopeful33250

@ahtaylor
I so appreciate your update. I feel with you both in the relief of "no metastasis" but I also share with you in your disappointment that there is currently "no fix" for your problem. I applaud your determination as you journey towards a cure and/or treatment.

If you are comfortable sharing more, could I ask what new med you are trying? Is the med being used to alleviate the symptoms of the blood sugar problem?

Jump to this post

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.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Apr 14, 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.

Jump to this post

@ahtaylor Thanks for your reply. I hope the Victoza is a help to you.

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