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

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Turkey | @tomrennie | Jul 12 8:41pm
In reply to @lindabees "Congratulations on the great results! I’m so interested in the fact that you’re now on just..." + (show)
@lindabees

Congratulations on the great results! I’m so interested in the fact that you’re now on just the cap for maintenance as that is what my husband is also doing now. I hadn’t yet come across anyone on a similar regiment. My husband had almost 50% reduction in his mets while in captem and now after 3 rounds of cap he is stable. (primary was surgically removed 16 years ago) Hiw have your results been while in cap only?

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I am doing great. On my 11th cycle of just capecitabine. My scan last Friday still showed no growth of my 4cm x 2cm pnet. The is no change in my liver lesions. Everything is still stable. I feel tired and have body aches the last few days,
but that is about it.

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1 reply
lindabees | @lindabees | Jul 12 9:03pm
In reply to @tomrennie "I am doing great. On my 11th cycle of just capecitabine. My scan last Friday still..." + (show)
@tomrennie

I am doing great. On my 11th cycle of just capecitabine. My scan last Friday still showed no growth of my 4cm x 2cm pnet. The is no change in my liver lesions. Everything is still stable. I feel tired and have body aches the last few days,
but that is about it.

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Good for you!!

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kim1965 | @kim1965 | Jul 13 2:12pm

Me wife had a similar diagnosis. We did the CAP/TEM, surgery of removal of tail of pancreas, remove gall bladder, then we completed 4 cycles of PRRT with good results each time. Currently, she is is on monthly injections of Ocretitide, possibly will go on liver transplant list, when the NET starts growing again. For now, she is good on the NET, but getting over back issues fixed. Best advice is to follow your team’s advice. We got this! 🙏

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meandmysis | @meandmysis | Jul 14 8:22am

My sister was diagnosed with a well differentiated Pancreatic Neuroendocrine tumor Grade 3 Stage 4. It started in the tail of her pancreas and metastasized to her liver. She went in to the ER with a bad pain in her right side and this is what they discovered on a CT scan. It was a year ago in May, so May 2023. She had just lost her husband in February of 2023, so she really didn’t think about what was happening to her. They did the lanreotide injections, but they didn’t work for her. She had her first Folfox chemotherapy treatment on July 8th. It was pretty tough for her. 🙏🏼♥️ I pray for her, you and everyone here. Don’t give up hope! I love my sis so much and she has a large support team within our family. Surgery wasn’t an option for her because she also had quite a few on her liver.

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1 reply
bnjncrew | @bnjncrew | Jul 15 5:38am
In reply to @meandmysis "My sister was diagnosed with a well differentiated Pancreatic Neuroendocrine tumor Grade 3 Stage 4. It..." + (show)
@meandmysis

My sister was diagnosed with a well differentiated Pancreatic Neuroendocrine tumor Grade 3 Stage 4. It started in the tail of her pancreas and metastasized to her liver. She went in to the ER with a bad pain in her right side and this is what they discovered on a CT scan. It was a year ago in May, so May 2023. She had just lost her husband in February of 2023, so she really didn’t think about what was happening to her. They did the lanreotide injections, but they didn’t work for her. She had her first Folfox chemotherapy treatment on July 8th. It was pretty tough for her. 🙏🏼♥️ I pray for her, you and everyone here. Don’t give up hope! I love my sis so much and she has a large support team within our family. Surgery wasn’t an option for her because she also had quite a few on her liver.

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My husband had his first Flo fox nearly 2 yrs ago. He went into the hospital in a wheelchair, now he is mowing the lawn on his tractor . Praying for you.

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pavlina60 | @pavlina60 | Jul 15 9:11am
In reply to @laurell410 "I was diagnosed March 2022 stage 4 grade 2 18%, primary tumour on the tail of..." + (show)
@laurell410

I was diagnosed March 2022 stage 4 grade 2 18%, primary tumour on the tail of my pancreas and metastasized to the liver (3 tumors on the liver) well differentiated. I receive 20mg octreotide every 28days

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Similar to my story! Except I also had endometrial cancer (simultaneous surgery in February 2023). So far stable and on 120 mg Lanreotide every 4 weeks. We got this!💜🦓

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vinnie694 | @vinnie694 | Jul 15 11:40am

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 !

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Laurell | @laurell410 | Jul 15 1:00pm

*Update*
My treatment regimen has been changed....it was 20mg octreotide every 28days it has been changed to every 21days (same dosage) due to nausea vomiting and diarrhea symptoms the last week before the next injection

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steven1953 | @steven1953 | Jul 15 4:56pm
In reply to @vinnie694 "My condition is similar stage 4 due to it metastasizing to the liver, origin is the..." + (show)
@vinnie694

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 !

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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

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kim1965 | @kim1965 | Jul 15 7:05pm

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! 👍

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