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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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@trivia

Hi Maria957, I have tried everything you can think of.
A combination of Afinitor, Anastrozole, Xeloda (low-dose) and Octreotide. It was working for awhile. Then progression began again.
I have a bone ablation for my sacrum area which is super painful right now (heat to kill tumor, then an expoxy-like substance used in joint replacements will take the place of the dead tumor material) scheduled in a week. It worked before, but my spine is peppered with bone mets (I believe 99% are within the bone). They expand as they grow and press on the bone outward and press on nerves, too. You simply can't do this with all of them, just the most painful. It is done by an Interventional Radiologist.
I am hopeful Lutethera works. I'm scheduled for Dec. I'll check in after my first treatment.
Good luck fellow-NETs!

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Replies to "Hi Maria957, I have tried everything you can think of. A combination of Afinitor, Anastrozole, Xeloda..."
Teresa, Volunteer Mentor | @hopeful33250 | Nov 7, 2022

Hello @trivia,

I so appreciate you sharing with @maria957 and the rest of our NETs group how your bone Mets are being treated. You are in my thoughts as you begin the Lutethera treatment.

I look forward to hearing of your progress as you journey with NETs.

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maria957 | @maria957 | Nov 8, 2022

Thanks a lot @trivia. I am the best friend of the patient, so I don't know the last update. I am from Argentina and english is my second language, so I am part of this forum in behalf of her. She went to the traumatologist last week and had a scan, so I don't have a feedback yet. I will let you know ASAP.
She is using morphine to kill the pain, and know started acupuncture, this helps a lot. Her oncologist suggested a second round of chemo, yesterday we had a lead for a second opinion. Love from Argentina.

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