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High grade 2 and 3 neuroendocrine

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

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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Replies to "Thanks for the feedback firepower. I also have grade 3 Ki67 of 42 and am looking..."
firepowr | @firepowr | Mar 19, 2023

Hi, Sean,

I started with two rounds of CAPTEM chemo, as my original PET DOTATATE scan did not qualify me for PRRT (Feb 2020). Unfortunately, I had significant growth after two CAPTEM rounds, and ended up doing 10 rounds of FOLFIRINOX, and then 50 rounds of FOLFIRI (Oxaliplatin removed Oct 2020 due to neuropathy). I was stable until Oct 2022. Redo of PET DOTATATE at that time and I had much better uptake, so I qualified for PRRT.
I’d love to hear updates on your journey. The best of luck and healing to you.

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Colleen Young, Connect Director | @colleenyoung | Apr 2, 2023

Sean, any updates? Did you hear back about the study yet?

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Turkey | @tomrennie | Apr 7, 2023

What is better about the PRRT then CAPTEM? I have been on CAPTEM for 7 months. Thanks.

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