Straight to the liver: Anyone have NETs originating in strange areas?

There are different Alpha prrt trials and there may be different side effects with each, including the swallowing issues. Here's the AI results I received regarding current clinical trials. I believe one of them may have fewer incidences of swallowing issues

Key Active Alpha-PRRT Clinical Trials:
AlphaMedix (212Pb-DOTAMTATE): A phase 2 study investigating this, which received FDA breakthrough therapy designation in 2024 for SSTR-positive NETs. It shows high response rates (ORR 56.8%) with manageable toxicity, targeting both PRRT-naive and previously treated patients.
ACTION-1 (225Ac-DOTATATE/Ryz101): A phase 3 trial assessing Actinium-225 labeled DOTATATE in patients who have progressed after previous Lutathera ($^{177}$Lu-DOTATATE) treatment.
[212Pb]VMT-α-NET: A Phase I/IIa study (NCT05636618) focusing on patients with unresectable/metastatic SSTR2-positive NETs.
RYZ401 (Actinium-225): A trial focusing on PRRT-naive patients with SSTR-positive solid

Hi hopefully I'm posting correctly, have eye issues so usually just a casual observer. First I want to thank EVERYONE who does post, I have learned SO much from you ALL! Hopefully I can pass it on in some way. I had left abdominal pain that was not going away, along with stomach cramps. I was dx in 8/23 Stage 4 liver Nets thru CT, MRI & biopsy, unknown primary, Stage 4, Grade 2. Was told the best way to determine what was actually going on was to do a possible liver debulking and exploratory abdominal surgery, this was done in 10/23. I was already missing a spleen, gallbladder, appendix and female organs due to separate issues years prior. It was hard, but during that surgery, a pancreatic net was discovered, thus I had the liver debulking and a distal pancreatectomy. The Pnet NEVER showed up in any MRI or any Dotatate PET scan. My surgical oncologist still follows me, I owe my life to him. He is not a Net Specialist, but had done a fellowship at Mt. Sinai in NETS and is very well informed about them. I began Lanreotide injections monthly that next Jan. 2024. Between that surgery and the injections, things have been at bay until recently when I found out I wasn't somatostatin avid, thus the Lanreotide injections were no longer working for me, my tumors were not lighting up on the PET scans (both Dotatate and FDG), making me not currently eligible for PRRT. I'm not showing anything on my remnant pancreas, but still have some liver mets and have had Y90 done on that. When I went on Creon digestive enzymes about a year and a half out from all that, my bellyaches went totally away, Because of my liver progression, my surgical oncologist and general oncologist suggested I transfer care to THE Ohio State University Neuroendocrine team. It was a great call, Dr. Konda and her team have been very thorough, they are ON IT, and I'm now doing CapTem chemo, 2nd round next week. That said, I would at the very least, have somebody look at your pancreas and everything more closely, either via endoscopy or surgery. ALSO it took me awhile to learn this, GO TO A NET SPECIALIST! BLESS ALL ZEBRAS!

@mmar2025 no swallowing issues. I continue to receive a Lanreotide injection every 21 days. Cancer has shown a slight reduction but for the most part stable with no new growth. I was having scans completed every 6 weeks, then three months and we are going to a six month cycle after the May scans. I feel great though I have days with fatigue setting in about 5 hours after I wake up from a nights sleep. I’ll either plow through the fatigue or take a nap of about an hour. Wishing all the best in their journey.