Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

I had abdominal pain for a year . Had CT’S , ultrasounds done , all negative. On one ct a renal aneurysm was found prompting a high density ct and bingo … there they were . Liver biopsy done and NET carcinoma found . My chromium was 978, with 4 shots was reduced to 308. I had a CT and bloodwork today and will see my oncologist again tomorrow.

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, my husband was diagnosed with stage four metastatic PNET cancer last October. He has a large mass on his pancreas and 26 spots on his liver along with spots on his spine and some lymph nodes. He also began monthly lanreotide injections in November along with oral chemo: capecitabine 500 mg. along with temozolomide 100 mg. He has experienced 40% shrinkage after 6 months of treatment. He feels like he did pre symptoms. We we wish you luck in treating your cancer.

Hello @rose4jim2417 and welcome to the NETs support group on Mayo Connect. What an encouraging report of your husband's tumor shrinkage after six months of treatment. You both must be thrilled with the results.

You said, "He feels like he did pre symptoms." As you are comfortable doing so, please share what type of symptoms he was having that led to the NETs diagnosis.

Did he have many side effects from the treatment?

Hi Teresa, we’re happy to share our experience. In late July of last year Jim began to experience unexplained weight loss, losing 20 pounds in one month. He experienced acid reflux and diarrhea daily. He used Pepcid for some relief of these symptoms for two months before treatment started. His symptoms stopped almost immediately after starting CAP/TEM even prior to the monthly lanreotide injections. He does have neuropathy on his feet which prevents him from walking more than 40 minutes at a time. He uses heel balm on his feet, which helps immensely.

I appreciate you sharing Jim's journey with NETs, @rose4jim2417. Each person's story is different, but we all fight the same battle with the help of our medical team.

How is Jim's energy level doing? Has he been able to gain any weight?

Teresa, we’re happy to share any info that might help. His energy level is good and he’s been able to gain back 10 lbs. He feels that, although not a healthy habit, he also drinks two Coca Colas a day which he says helps him tolerate the chemo, no tea or coffee.

Finding a way to deal with the side effects of chemo are different for everyone, @rose4jim2417. I am glad that he has found that Coca Cola works for him.

Has his doctor indicated how long he will be taking the chemo?

His Dr. initially wanted him to take a break from chemo after six months but with about 20% shrinkage after each three month cycle and good lab results, he said he can stay on it for up to 13 months. He will be receiving the lanreotide monthly injections for the rest of his life. If the cancer becomes more aggressive he will resume chemo.