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Prognosis for Metastasized NET

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

I should mind my own business
However!
I have had 4 different options if there is a 5th I would get that
Since December 2019
I have had a liver resection. Took Lanreotide and ocreotide injections. 2 Bland embolizations and took Afinitor
This Monday I got really bad MRI results!
That said!!!!!
I am now going to start PRRT
Don’t read results no one has a crystal ball for how there life will end or when
Just keep moving forward stay ahead and continue to live without the heavy baggage of WHEN but with the lighter baggage of everyday something new is being developed
BELIEVE!!!

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Replies to "I should mind my own business However! I have had 4 different options if there is..."
Teresa, Volunteer Mentor | @hopeful33250 | Mar 6 9:01am

Hello @sophiarose,

I'm sorry to hear that your MRI results were not what you had hoped for. I can only imagine how disappointing that was for you. Your journey with NETs has been filled with lots of different treatment modalities and I commend you for venturing out and being proactive with this disorder.

I see now that your next step will be PRRT. We have several discussion groups where this has been discussed. In case you would like to read about other members' experiences, here are some links to those discussion groups?

--Interested in Hearing People's Experiences with PRRT
https://connect.mayoclinic.org/discussion/prrt-treatment/
--My Husband Has Had His Second PRRT and Is Doing Well
https://connect.mayoclinic.org/discussion/my-husband-has-had-his-second-prrt-and-is-doing-well/
I would appreciate you posting as you proceed with PRRT. Do you have a date for your first PRRT treatment? Will you post updates as you can?

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bnjncrew | @bnjncrew | Mar 7 5:57am

Stay positive! My husbands liver tumors have been as big as 9 cm ..up and down dependent on treatment. No scans again until April but feeling positive. He seems better than he has since the beginning. Recouping well from second PRRT.

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