Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Our case also was stage 4 with too many tumors on liver to count. Not eligible for surgery. 2 years later after 9 cycles of CAP/ TEM, surgery on tail of pancreas, remove gall bladder, debulk as many tumors as possible. It reduced the tumors up to 70% on liver. We then followed up with 4 cycles of PRRT, and reduced them further. I’m not a doctor, but I’m saying to ask your team, fight for your health, and find the best course of treatment for your case. Let us know what questions you have. You got this! 👍

I have the same cancer as you. I have been on lanreotide almost a year. So far I have mild stomach cramps and gas but the lanreotide hasn’t stopped the tumor growth in my liver. I go next week to the Mayo in Jacksonville to have a MRI and Pet scan. My oncologist has also suggested that I go on the Lutathera treatment. I haven’t made up my mind if this is the direction I want to go. I would like to know how other people did on this treatment. So far I feel pretty good overall, thanks to God, please keep us updated. I will keep everyone in my prayers. There is hope through Jesus. God Bless

I have the same cancer as you. I have been on lanreotide almost a year. So far I have mild stomach cramps and gas but the lanreotide hasn’t stopped the tumor growth in my liver. I go next week to the Mayo in Jacksonville to have a MRI and Pet scan. My oncologist has also suggested that I go on the Lutathera treatment. I haven’t made up my mind if this is the direction I want to go. I would like to know how other people did on this treatment. So far I feel pretty good overall, thanks to God, please keep us updated. I will keep everyone in my prayers. There is hope through Jesus. God Bless

My prayers are with you on your decision.. I’ll definitely keep you posted on the results of my PET scan in August..

My condition is similar stage 4 due to it metastasizing to the liver, origin is the small intestines. I was also blessed with carcinoid syndrome, which is facial hot flashes. Originally started with Lanreotide which after 3 months didn’t stop the hot flashes, then I started ocreotide , which after a couple of days stopped the flashes. I’ve been on that for over 1 year. I too do have tiredness but I try to fight it by going to the gym, I still have stomach cramping and gas I was given a prescription to help that which I have not yet filled I believe it’s called (Creon ). I’m just so hesitant on starting another prescription. Last MRI showed no new tumors , but a few have grown. Scheduled for a PET scan next month to determine whether to let it go on the monthly shots or to do a radiation treatment called LUTATHERA. I am seeing a NET specialist at Mayo Jacksonville whom I trust entirely.. Don’t loose hope !

@vinnie694 - I have been using Creon for more than a year. It is a mixture of pancreatic enzymes(which due to surgery my pancreas does not produce, or not enough, anyway). It helps digesting the foods we eat, instead of them going straight to waste. It is rather expensive, but I clearly am benefitting from it , e.g. no running to the bathroom 15 min after eating, and most of the vitamins and minerals we consume are staying in my body.

Hi all, I’m new to this forum and this condition. Started with GI pain and inconsistent stool about 8 weeks ago (maybe longer in retrospect). Then the flushing, palpitations, loss of appetite, weight loss, and just feeling weak and unwell. After seeing 4 doctors, I ended up going to Cleveland Clinic Weston, FL where they did (at my request) the 5-HIAA urine test and 64 CU Dotatate PET scan. The urine test came back positive and the PET lit up areas of my duodenum and it looks like a 4mm nodule in right lung with possible lymph involvement, although they actually told me the scan was normal!! (It’s not clearly). I have the textbook carcinoid syndrome symptoms as stated above. Unfortunately, because Cleveland Clinic does not have NET specialists, they are flying blind and I am having to tell them to what tests and scans I need so I can get the disease localized and treated somewhere that has a clue. This week I am going back to Cleveland Clinic to have an upper endoscopy with biopsies as well as an upper endoscopic ultrasound to look at pancreas, ducts etc. I am going to also demand MRIs and ultrasounds of the liver, lungs and pancreas. The PET didn’t show anything in the liver, but I don’t trust that because I’ve read a lot on this site about liver metastases being very small and numerous and hard to see on scans. I’ve also learned that you don’t get the carcinoid syndrome symptoms unless it’s in the liver and/or lungs. This has been a long, scary road that’s upended my life and I don’t feel I am dealing with experts which is costing me precious time. I have FL Blue insurance so I’m kind of stuck with what we have here. Any advice, thoughts and prayers would be welcomed. This isn’t what I expected at 56. It’s hard to function. PS - I’ve been thinking about going to Moffitt in Tampa, but they seem to only focus on GI, so if it’s in the liver or lung then not sure they can help? Mayo FL is out of network for my insurance, but I’d go there if it was better. Also even thinking about going to a true specialist like MD Anderson or Mayo MN and paying out of pocket. I’d have to sell our house to cover it but what’s a house with no life? Angry, sad and confused. Sorry to be such a downer.

Hello. I understand your plight to find the right care. My wife has a grade 2, stage 4 pancreatic Net diagnosed in April this year. We live in Georgia where there is good support for surgical NET treatment but no comprehensive NET program. The approach we took was to meet with a local medical oncologist who specializes in NET (30% of his practice) We then flew to NY for a consultation at Sloan Kettering. Dr. Reidy reviewed her CT, Pet dotatate, labs and conducted a thorough history and physical exam. She recommended a treatment approach that would not have been available as first line in Georgia. Her local oncologist was happy to implement that protocol and has coordinated nicely with Reidy. This approach may work for you at significantly lower cost than going fully out of network.

Our case also was stage 4 with too many tumors on liver to count. Not eligible for surgery. 2 years later after 9 cycles of CAP/ TEM, surgery on tail of pancreas, remove gall bladder, debulk as many tumors as possible. It reduced the tumors up to 70% on liver. We then followed up with 4 cycles of PRRT, and reduced them further. I’m not a doctor, but I’m saying to ask your team, fight for your health, and find the best course of treatment for your case. Let us know what questions you have. You got this! 👍