High grade 2 and 3 neuroendocrine

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.

My experience is very similar to those of @firepowr. Three of the largest tumors in my liver have also shrunk a little. I'm being treated at Mayo Rochester.

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

I am also at Mayo Rochester with Dr. Halfdanarson and Rachel Eiring. Wonderful team.

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.

Completely agree. Good luck!

I'll stay in touch my best to you both.

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

Unfortunately, I was not accepted to the trial study (COMPOSE). In addition to neuroendocrine cancer in my liver I also have a skull base meningioma, the benign mass is not uncommon for those of us with neuroendocrine cancer according to my NET specialist. Looking at PRRT and CAPTEM. In the meantime, I am cramming as much fun as I can into whatever time I have left.

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