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@firepowr

Mark, I was diagnosed with NETs (grade 2/3, inoperable, incurable) in Jan 2020 at Mayo Rochester. I had 2 rounds of CapeTem (didn’t work for me at all), 10 rounds of FOLFIRINOX and then 50 rounds of FOLFIRI. I was stable on chemo until Oct 2022. Had my first PRRT in December. I’m five days out from my second PRRT treatment. Had a new baseline CT scan before the second treatment—which showed darkening of liver tumors and more defined boundaries, suggesting the tissue is dying. I have tumors in my liver (about 80), bones, pancreas, adrenal gland, lungs. So far, the main side effect I’ve experienced is fatigue. I’ve had some mild nausea and lightheadedness, pain at tumor sites and referred pain in my right shoulder, too. Weight is stable. I have actually gotten my sense of smell and taste back—I hadn’t realized how deadened they were by chemo until I wasn’t having it anymore. Wishing you the best of luck.

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Replies to "Mark, I was diagnosed with NETs (grade 2/3, inoperable, incurable) in Jan 2020 at Mayo Rochester...."

Your response is sincerely appreciated -
My wife is scheduled for PRRT @Fred Hutch Seattle on 3/9/2023 as lanreotide is not continuing to produce good results. The tumors have spread from liver (lots of them there) to the hip bone structure and some in lower spine (based on a recent Ga68 scan).
We will have many questions to submit locally and to get answers to these ASAP!!

Thanks again,
Mark