NET - Insulinoma

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!

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!

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?

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!

Hi Everyone! @ahtaylor, @hopeful33250, @marilyn2525, @amya

My surgery went well yesterday! Pre-op preparations started at 6:30am and surgery was done by 10:30am. I was in recovery room for 2 hours before they moved me back to my room. They found the tumor where expected on surface of the head of the pancreas and were able to successfully enucleate! Pain meds are helping me to deal with the pain. Today I felt much better and walked 3-4 times with podium. Had nice hot veg broth all liquid for dinner! Hopefully tomorrow I won’t be gassy as much and will be able to eat something.
All nurses here are excellent and go above and beyond to provide the necessary care. Will post more updates in coming days.

I can’t thank you all enough for the support and encouragement. I was in dual minds about rescheduling this appointment due to Covid but the advises given here really helped me to make a decision and move forward.