I had liver scans & surgery as a first step since I had been undiagnosed to the point I weighed a little over 105 lbs (and I have big bone legs).

It was performed by an interventional radiologist. 3 positive tumors were found and removed. This action ordered by a Dr. Arthur Vinik, an international know endocrinologist, saved my life.

Unfortunately the primary has never been found and could be extremely small. They've tried to find it again a couple of time without success.

When first diagnosed, Dr. Vinik put me on a pump 24/7 of Sandostatin and 2 injections every two weeks. I stayed on both for 3 1/2 years. At that point I only had the 2 injections every 2 weeks until about 2019 or 2020.

Since then I have gone down to 1 injection every 2 weeks. I still flush sometimes (it likes to let me know it's still there I guess).