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Prognosis for Metastasized NET

Neuroendocrine Tumors (NETs) | Last Active: Mar 20 11:16am | Replies (63)

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@hallinvestmentgroup

I was diagnosed in Jan 2019 with a well-differentiated, functioning Net with a Ki-67 index of 15. It was a gastrointestinal NET that had metasticized to the liver. Multiple Tumors < 1 cm at the time.

It is viable for resection.

I started Lanreotide in Sept 2019 and slowly progressed until March 2023. The tumors had slowly, but steadily grown to where the 4 largest tumors were then between 3-4 cm ea.

I went to the Mayo Clinic for a 2nd opinion (my Oncologist said I three options (wait and check after MRI 4 months later, start Afinitor or start radiation treatment (Lu-177).

I waited 4 months and by then the tumors increased 25%, so I started chemotherapy pills ((Afinitor)in Oct 2023.

An MRI IN JAN showed no stoppage in growth, so I discontinued the Afinitor and had my first radiation treatment 1 week ago.

The most recent clinical trials all point to Lu-177 as the most successful outcome and some have recommended that Lu-177 be moved up to the 2nd treatment modality, while other trials are now in place with the “next” possible treament with radiation.

It apparently is individually dependent on the patient as to what course of action seems most appropriate

I also take Xermelo to control diarrhea and it has helped significantly (reducing episodes from 4-5+/day to approx once/day, a HUGE relief. It’s much easier to plan activities/outings/travel

Good luck on your future health decisions!

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Replies to "I was diagnosed in Jan 2019 with a well-differentiated, functioning Net with a Ki-67 index of..."

CORRECTION!

Mine is NOT viable for resection.

Hello @hallinvestmentgroup and welcome to the NETs support group on Mayo Connect. I appreciate you sharing your experience with NETs. You said that you went to Mayo Clinic for a second opinion. I'm wondering how they advised you.

You mentioned that you had your first radiation treatment a week ago. Do you know how many treatments you will have and how frequently they will be?

I'm glad to hear that the Xermelo is controlling the diarrhea. Are there any other symptoms that are bothersome right now?

Thank you for sharing in such detail. The information is so helpful. You’ve obviously been through a lot, and there’s no stopping you! I admire how knowledgeable you are about this process. Good luck with your treatment! Please keep us posted.