Certainly willing to share more. I have been on PPI for 20 yrs, present dosage is 120 mg omeprazole/daily. In 9/2013 gastrin tested for first time and was 1400 while on PPI (80 mg/da at the time). Explosive diarrhea and hospital visit with pancreatitis. CT discovered pancreatic cyst. Follow up with Endocrinologist produced series of tests that we all have been through and a DNA sequencing. DNA result was autosomnal dominant MEN1 positive. Present level of PPI (120mg/da) seems to control diarrhea effectively, unless an episode occurs, then all bets are off. This will occasionally based on diet usually – too much fat or strangely salad. Flushing is less frequent – I joke with the girls in my house that I have "hot flashes", I get the eye roll.:) Persistent abdominal pain/ache with intermittent sharp pain on right side. Pain radiates to right mid back (behind lower part of ribs to just below ribs). Some bone pain in hips and spine, however this is intermittent as well. Reflux is worsening so I am sure an adjustment to meds are needed, however at 120 mg/day I am not sure what is next.
I have had EDGs and EUS multiple times at least 4 in the last four years, MRI, CTs. The latest EDG identified a nodule, biopsy indicated further review needed. EUS, indicated 3mm submuosa involved tumor. Path report indicates stained for NET gastrinoma Ki-67 of 1%. Interesting that no scan has identified the tumor to date, suspect that is due to size or how the contrast is applied and pics are taken – timing is everything.
Desire from Mayo is where I am on the spectrum of MEN1/NET prognosis, treatment plan and what is next step.