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Should I want more treatment after pancreatic nets with lymph nodes?

Neuroendocrine Tumors (NETs) | Last Active: Jul 31, 2023 | Replies (18)
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@vinnie694

I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to the liver. I also have carcinoid syndrome (hot facial flushing). Started on Lanreotide, after 3 months the flushing did not stop, switched to octreotide, and within three days the flushing ended. June I had a follow up MRI, which showed no growth of existing tumors, and no new growth. I am being treated at Mayo Jacksonville, also no radiation or chemo.

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Replies to "I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to..."
kwan | @kwan | Jul 25, 2023

It sounds like the Octreotide therapy works for you. Was there any surgery done before the Lanreotide treatment ?

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helloitsme | @helloitsme | Jul 28, 2023

Hi there Vinnie,
I was recently diagnosed with the same, metastasized to liver. Did you have small intestine resection surgery and liver debulking before starting the injections? That is what they are suggesting for me, and I am very scared of the surgery. Mine are grade 1, stage 4. I have no facial flushing...just diarrhea. I'm going to Mayo Clinic in Phoenix. I'm hoping you continue to do well with your injections and sending positive healing energy your way!

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