NET - Insulinoma

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?

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?

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!

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.

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!

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.

@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?

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!

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!