Anyone have experience with "functioning" Pancreatic NETs?

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

Have any of you done PRRT treatments? They are going to discuss this with my sister.

I have not. Had debulking surgery and am having CT scans every three months and no new growth. So far Lanreotide seems to be working for me. My doctor told me when Lan stops working we will look at other available options.

That’s wonderful. The Lanreotide is not working on my sister. 😔

Yes. They are going to talk with us the next time we meet on the 28th. I was wondering if anyone could educate me more on PRRT and how it affects people who have done this treatment.

What was the radiation treatment like? I have not heard of Sirt y90 treatments.

They map your liver about 30 days before the treatment I have tumors on both sides so 2 treatments are done about a month apart. They go up the artery in your groin and drop about a teaspoon size of y-90 microscopic glass spheres that actually number about a million. These guys lodge near the tumors and kill or shrink them. Treatment itself isn’t too bad although not fun? Best part for me I finally had something work to shrink my many tumors. Gastrin level has dropped the 250 level from 2000 it was done in August 2022 still stable! Unfortunately I had rare side effects I had radiation gastric ulcer 1 bead got loose and recovery was rough anything that went down hurt had to go back on a feeding tube for a couple months and also have a kidney that no longer functions. I hope I didn’t scare anyone my side effects are rare I would do it again if it was recommended.

My wife completed her 4th PRRT treatment on March 7th. She started last August, each treatment is 8 weeks apart. She has been able to continue part time work after the mandatory stay at home period after each treatment. You will be tired, The last treatment usually causes the most tiredness and diarrhea.