Gastrinomas and Whipple procedure

I too have Gastrinomas had a perforated esophagus had major surgery to repair it. They discovered it was in the liver. Currently my pancreatic tumor is 4.5 CM I am grade 2 ki-67 is 7% no mention yet of whipple I hope I don’t have to get that done. I had high burden of liver tumors that had to get controlled as my gastrin was 2,000 2 years after SIRT radiation it is down to 200 I now have tumors on the spine still feel pretty good. I am glad you are going to Mayo hopefully you don’t need a whipple good luck and let us know what happens. Please get a second opinion before the whipple we are all different it may be the best option a good team will know that!

Thank you for responding.
Mayo will be our second opinion.His gastrin level was 3700 at diagnosis. Just praying they can help.

I’m sure they will help! It might not be easy but you are going to a good place something needs to get done. That high Gastrin causes a lot of problems. It needs to be controlled you didn’t say if he has liver tumors?

Not that we know of yet, but he does have lymph nodes in the area. And also around the stomach.

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.

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.

I had explosive diarrhea also not a fun thing to deal with! I get the lanreotide injections every 28 days which controls that. I take esomeprazole 3 x daily and Pepcid 1x and sulcrate 3 x . I read where they don’t usually do a whipple if it is in the liver. Not sure that is true we are all so different. My first treatment was lanreotide then 7 months of chemo these did not control tumors in the liver I had about 30 they were causing most of the excess Gastrin I then had high dose radiation on my liver that finally shrunk the tumors. No treatment on pancreas even though that is the primary location of my disease tumors in the pancreas grow much slower than the liver because tumors need blood supply. I am not sure of the future of the pancreas. It does t sound like you have any answers yet that is very difficult to deal with. May 5 can’t get here fast enough I believe the PeT scan with show them a lot! He will more than likely start with 28 day injection while they develop a treatment plan.