Anyone have experience with "functioning" Pancreatic NETs?

I have 1 PNET, diagnosed last Dec. Still educating myself. This is a good sight for me to stay in touch with. I pick up a lot of things to research. There are also monthly zoom meetings you can sign up for. Sorry you have this but we role with the punches and keep moving forward right. Best wishes for you!

I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4). I underwent distal pancreatectomy/surgery for that (alongside with total hysterectomy for endometrial cancer). Mine was 'debulking surgery', as there were too many small tumors on my liver. I also had spleen removal ( tumor was too close and engulfing the head of the pancreas and the spleen), and gallbladder removal. In March 2023 I started Somatuline/Lanreotide therapy every 4 weeks. I take Creon as my pancreas cannon supply the necessary digestive enzymes. I also follow high protein mostly plant and fish diet. Just had my first anniversary from my chemotherapy :).
You can reach out to me here or in private if you have questions, or are interested in my experience.

I have a primary pancreatic net with metastasis to the liver functioning gastrinomas. I was first diagnosed in May 2021 I am grade 2 ki-67 7% gastrin level was 2,000 I started on lanreotide injections in August it controlled diarrhea gastrin level dropped to about 1500 I was then put on Captem for 7 months I tolerated that fairly well but gastrin level only dropped to 800 and continued to rise back up to 1300 no more Captem they decided it wasn’t working In August of 2022 I had Sirt y90 treatment to both sides of my liver as I have about 30 tumors that are inoperable. Gastrin is down to 250 most tumors had some shrinkage scan every 3 months have been stable since the radiation treatment which is another whole story. Good luck let me know if I can be of further help

Wow, sounds like a lot of surgery! How are your scans doing now? They hold me mine are inoperable and don't respond to chemo so trying to navigate around that.

Sorry wrong person

Do you have a multidisciplinary team? I also had major surgery prior to diagnosis cause was from disease damage to my esophagus high gastrin need to be controlled do you have any major symptoms or on any treatments yet? What stage and grade are your tumors?

I have CT scans every 3 months. So far, no new growth was detected, and the ones that were nor resected are stable.
Good luck with finding a therapy that works for you!

I don't believe I have a team. Only symptoms are inconsistent bm's and some slight abdominal pain. I was told I am at grade 2, stage 4 because it is throughout my liver.

They must have done some testing did get a pet dotatate scan or biopsy do you have receptors? Do you know your ki-67 these things tell you a lot. Does the University of Kansas have a net specialist? Educate yourself and get the right team.

By the way normal gastrin level in a man is 25-111