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Gastrinomas and Whipple procedure

Neuroendocrine Tumors (NETs) | Last Active: May 2 9:32pm | Replies (11)
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@jessie59

Hi Jon, I also have Gastrinoma PNET of Grade 1, Stage 1, well defined, functional tumor which was removed via Whipple surgery at head of pancreas in May 2020. Since July 2024 is on 3 monthly surveillance of Blood tests (with Gastrin sent to Mayo clinic) shot up to 750 & MRI with contrast in the liver as doctors suspected metastasis to liver. I had gone for CT scan (white spots in liver), 2x MRIs, GA68 Doctate PET scan, ultrasound in liver & 2x endoscopy but results are inconclusive. However I am having the symptoms of occasional diaharrea and almost daily dull pains in my stomach though I am currently on 2x40mg Esomeprazole daily to suppress the Gastrin. My next blood tests & MRI is in May25. As per my oncologist, unless they find the exact location of the tumor(s) for biospy, he is not able to order treatment.
Is your husband having any symptoms?
My surgeon advised was to remove the tumour when it was discovered in 2020.

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Replies to "Hi Jon, I also have Gastrinoma PNET of Grade 1, Stage 1, well defined, functional tumor..."
jonswife | @jonswife | Apr 22 10:32am

Oh yes head had explosive diarrhea for almost a year now. Been to
gastrointestinal specialist and er visits for dehydration. February had
another bout and CT. Scan revealed a mass. Send us to bigger hospital for
biopsy. On the way there had an upper GI bleed. Stomach filled with blood
and push acids into esophagus which damaged it. Unable to do the biopsy.
Less than 2 weeks later helicopter ride back to the cities with a double
pulmonary embolism. Had to have thrombolectomy. After that they were able
to do the biopsy. Had appt. With the surgeon, who talked about a whipple
procedure as the tumor is at the head of the pancreas. Dot. Scan revealed
metastases. Referred us to Mayo. He has been omeprazole twice a day,
sulcrafate for the throat damage. Has hard time swallowing and now is
having hand tremors and is unsteady on his feet. Mayo appt. May 5th.

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