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NETs: Anyone has Liver debulking for liver metastasis?

Neuroendocrine Tumors (NETs) | Last Active: Dec 29, 2022 | Replies (46)
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@caitrina

Hi, I too have NETs that were discovered in my ileum after being in the ER many times sometimes 2-3 times a day and then admitted with a GI tube. This went on for about 4 yrs until a surgeon came in and said we r doing exploratory. They did so and the tumor they found was in stage 3. It was successfully removed and all was fine for about a year or 2 and then it was found in my liver. It is somewhat scattered but I begin treatment next week using Lutera. I think that’s the name! Anyone else experience this drug?

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Replies to "Hi, I too have NETs that were discovered in my ileum after being in the ER..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 27, 2022

Hello @caitrina and welcome to Mayo Connect. I am so glad that you found this forum. We have many members who have experience with NETs and can share their stories with you.

I would like to introduce you to Connect member, @kathryncd, who has also had NETs in the ileum. I hope that she will join you in discussing her journey with NETs.

You mentioned that you will be having treatment with Lutathera, also known as PRRT. Here is some information from Mayo Clinic's website about this nuclear medicine treatment that targets NETs.

--Nuclear Medicine Therapy
https://www.mayoclinic.org/departments-centers/nuclear-medicine-therapy/sections/about-nuclear-medicine-therapy/gnc-20489020

Another Connect member, @kjstein, has had PRRT and I hope that she will join to share her experience. Here is a link to her post about PRRT,

https://connect.mayoclinic.org/comment/713543/

What type of symptoms are your experiencing now, @caitrina, and when do you expect to start PRRT treatment?

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