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Posts (6)

Jul 23, 2019 · High gastrin levels in Digestive Health

@miliangy gastrinomas are extremely difficult to locate even with excellent imaging. PPIs do elevate gastrin levels as you stated. If you have been treated for an extended period >6 months with ppi, you should have a men1 work up with an endocrinologist. The lesion on the pancreas should be studied further as well by a Gastro doc. Potentially you should consider a consult with a NET specialist as well. Keep pushing for more as you speak to your doctors.

Feb 7, 2019 · New to Mayo: MEN1 with duodenum NET G1 in Neuroendocrine Tumors (NETs)

Very well. Genetic cancer team was extremely informative. Based in my present quality of life we will monitor with close surveillance, next scans in 6 months. Multiple micro nets and cysts throughout pancreas body; objective is to monitor for growth, expecting 2mm growth per yr as baseline. Growth faster or new nets will require further evaluation and consideration of surgery. Surgery will impact quality of life so plan is to delay until necessary to intercept mets. Dr Thor indicated the ability to monitor has improved dramatically so that treatments are planned strategically thereby improving overall survival and quality of life. Since that time, as the gastrinoma was trimmed significantly I have reduced ppi from 120mg/day to 40mg/day. I am still in wean process but will continue to reduce until symptoms require treatment. I am hoping to move to H2 vs ppi if possible due to the sudr effects of long term ppi use. Overall excellent outcome with optimistic treatment plan.

Dec 22, 2018 · New to Mayo: MEN1 with duodenum NET G1 in Neuroendocrine Tumors (NETs)

Took abit to get referred to NET team, as I started out in general GI. Got the tests ordered and accomplished to further investigation. Good news in that area effected is limited based on DOTATATE scan. Duodenum, pancreas and possible antrum stomach. EUS and pathology confirmed gastrinoma in duodenum (small 6mm) and pancreas with cluster of micro tumors (10mm). All in close proximity. Next stop is oncology to determine best approach. 1/11 is next appt due to holidays.

Dec 12, 2018 · New to Mayo: MEN1 with duodenum NET G1 in Neuroendocrine Tumors (NETs)

@hopeful33250, Yes I will update as I proceed through Mayo. My local gastro has suggested a 68GA scan, so hoping I meet the indications for one at Mayo. It will certainly provide answers some of my questions. Do you mind sharing what your treatment plan was for your d-nets?

Dec 12, 2018 · New to Mayo: MEN1 with duodenum NET G1 in Neuroendocrine Tumors (NETs)

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.

Dec 11, 2018 · New to Mayo: MEN1 with duodenum NET G1 in Neuroendocrine Tumors (NETs)

Dx- MEN1 with duodenum NET G1. Heading to Mayo on 12/17. Just initial evaluation and a couple of labs set. At appt set up they said be prepared for 4-5 day stay. What will the rest of the time be like if nothing set up for now? Will there be a lot of just waiting?