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High grade 2 and 3 neuroendocrine

Neuroendocrine Tumors (NETs) | Last Active: Apr 15, 2023 | Replies (27)
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@firepowr

I was diagnosed in January 2020, grade 3 NETs with tumors in liver, lungs, pancreas, bones, adrenal gland—all over. Incurable and inoperable.
I had 62 rounds of chemo until Oct 2022, as scans showed tumor growth when I had been stable for quite some time. I had my first PRRT treatment in December, second in early February, and will have my third at the end of this month. They did a scan before second treatment and saw a darkening of tumor areas—which they called promising as it could be showing dying tissue. I will not have scans again until just before my fourth treatment at the end of May.
I’ve had some fatigue just after treatments, but otherwise, side effects have been manageable.

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Replies to "I was diagnosed in January 2020, grade 3 NETs with tumors in liver, lungs, pancreas, bones,..."
ssf | @ssf | Mar 19, 2023

Thanks for the feedback firepower. I also have grade 3 Ki67 of 42 and am looking at a trial study that includes PRRT vs standard of care medication which in my case would be CAPTEM chemotherapy. I'll know in a few weeks if I qualify. Fortunately, I was able to have surgery on the small bowel and debulking of my liver here in Dallas in November 2021 which helped.
Thanks
Sean

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