1. < Neuroendocrine Tumors (NETs)

Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Posted by ahilker @ahilker, May 24, 2023

Hi everyone. I am new to the group and wondered what kinds of symptoms others with Pnet go through. I was diagnosed just under a year ago and began the lanreotide infusion shot this past October. I went into my regular doctor last May for what I thought was a gall bladder infection. My doctor sent me in for a full abdomen CT and found a 3 cm mass on the tail of the pancreas. At the time my doctor told me we need to look at the mass first before looking into the gall bladder. After several PT scans and biopsies they can see small tumors covering my entire liver the largest being 1.1 cm. Since surgery was not an option, I started on the infusion. My nausea did not go away so I went back in to see about my gall bladder. Since then I feel 25 times worse. I’m exhausted all the time, very little appetite but no real weight loss, depression from having to rely on my family and pain around the pancreas and liver. I am grade 2 well functioning stage 4. Any suggestions would be greatly appreciated

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 13, 2023
In reply to @lindaamos "I had abdominal pain for a year . Had CT’S , ultrasounds done , all negative...." + (show)
@lindaamos

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.

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So good to hear of the reduction in the chromium numbers, @lindaamos. Has the pain been reduced as well?

I look forward to hearing from you again. Will you post again after tomorrow's appointment?

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kevinmonroemi | @kevinmonroemi | Jun 19, 2023

I was diagnosed with neuroendocrine metastic to the liver and 1 lymph node with pancreatic primary in May of 2021. I have functional gastrinomas they are approximately 30 liver tumors of all sizes 1 large one in the pancreas with atrophied tail. Gastrin level was 2,000 which destroyed my digestive tract and caused a tear in my esophagus when I was in for surgery which they had to also remove a rib to correct the perforation they saw the cancer on my liver. Petscan confirmed pancreatic primary I was fortunate to have receptors. I have had 25 lanreotide injections with very little problems they only seem to make me tired they are controlling my symptoms well mostly the severe diarrhea, large doses of proton pump inhibitors control some of the belching that was almost constant. I have grade 2 with ki-67 of 7%. I had 7 months of Captem that I did not respond to even though I tolerated it well it didn’t work. I was told infusion chemo is not a treatment that works for me. Due to the burden of tumors and the high gastrin levels the liver tumor board at the Rogel Cancer Center at University of Michigan Medical Center decided I should have Selective internal radiation of the liver with y-90 Dr Sahai is incredible! Stay positive! There are a lot of treatments study your cancer and get a Multidiciplinary team at a top Cancer center if possible they are the experts we need. We are all unique!
Tumors are now stable with some time off any treatment except lanreotide

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sturns | @sturns | Jun 19, 2023
In reply to @pmberman "Hi all, I’m new to this forum and this condition. Started with GI pain and inconsistent..." + (show)
@pmberman

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.

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I go to Moffitt in Tampa. I get santosattan. (sp) I have 23 tumors on my liver and all around lympth nodes and pancreas. I am having alot of pain but they are specialists and great to work with from the janitor up to the highist surgeon. Good luck

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 25, 2023
In reply to @rose4jim2417 "Hello, my husband was diagnosed with stage four metastatic PNET cancer last October. He has a..." + (show)
@rose4jim2417

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.

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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?

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1 reply
rose4jim2417 | @rose4jim2417 | Jun 25, 2023
In reply to @hopeful33250 "Hello @rose4jim2417 and welcome to the NETs support group on Mayo Connect. What an encouraging report..." + (show)
@hopeful33250

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?

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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.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 25, 2023
In reply to @rose4jim2417 "Hi Teresa, we’re happy to share our experience. In late July of last year Jim began..." + (show)
@rose4jim2417

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.

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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?

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1 reply
rose4jim2417 | @rose4jim2417 | Jun 25, 2023
In reply to @hopeful33250 "I appreciate you sharing Jim's journey with NETs, @rose4jim2417. Each person's story is different, but we..." + (show)
@hopeful33250

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?

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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.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 26, 2023
In reply to @rose4jim2417 "Teresa, we’re happy to share any info that might help. His energy level is good and..." + (show)
@rose4jim2417

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.

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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?

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1 reply
rose4jim2417 | @rose4jim2417 | Jun 26, 2023
In reply to @hopeful33250 "Finding a way to deal with the side effects of chemo are different for everyone, @rose4jim2417...." + (show)
@hopeful33250

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?

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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.

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1 reply
gsm13161 | @gsm13161 | Jun 27, 2023
In reply to @rose4jim2417 "His Dr. initially wanted him to take a break from chemo after six months but with..." + (show)
@rose4jim2417

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.

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Ask your doctors about adding Temozolimide to your regimen. It is an oral chemotherapy that is combined with the Lanreotide/Sandostatin injections and is usually well tolerated. Take solace, I have stage 4 advanced metastatic Paraganglioma, multiple surgeries, radiation and still the oncologist feels I can live a long life. Stay on top of the dr. appointments and subsequent treatment decisions and know that neuroendocrine cancers are normally slow progressing. Also talk to the dr. about having genetic testing is it can assist future treatment decisions.
God bless you☀️☀️☀️

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