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Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Neuroendocrine Tumors (NETs) | Last Active: Oct 31 7:28pm | Replies (113)
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@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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Replies to "My condition is similar stage 4 due to it metastasizing to the liver, origin is the..."
steven1953 | @steven1953 | Jul 15 4:56pm

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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pavlina60 | @pavlina60 | Jul 18 10:37am

@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.

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