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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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@pavlina60

Thank you, kim1965! So far I am only on Lan injections. I have a very good oncologist, but am thinking after the scans in June to ask for a referral to Roswell Park in Buffalo, NY, where there are NET specialists and ask if I can be put on CAP/TEM or why not.

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Replies to "Thank you, kim1965! So far I am only on Lan injections. I have a very good..."
kim1965 | @kim1965 | May 25, 2023

If your oncologist is not a NET Specialist, get one! That is the number #1 suggestion you will here from everyone on this site. NET is very rare and a lot of oncologists even very good ones have not seen NET or enough cases. Have your very good oncologist refer you to a NET specialist, that is his job to get you the very best care available. Let’s us all know how we may help you further. You got this!

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