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.

@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?

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

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@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?

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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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@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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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?

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@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?

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@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?

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

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@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.

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@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 @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.

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@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?

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@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!

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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. . .

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