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Discussion4 treatment options from my doctor, which one should I start with?
Neuroendocrine Tumors (NETs) | Last Active: Feb 10 2:00pm | Replies (57)Comment receiving replies
Replies to "Hi all, Just curious to see if anyone has had Lutathera (IV radiation) treatment or have..."
sandy23 search on 'PRRT' here in Connect; there are several posts about patients experiences with PRRT and NETS. I finished a treatment of 4 cycles a little over a year ago with very good results and few side effects. I think I have posted with details a couple of times. I think you will find the string helpful. Hope it goes well for your husband and you.
I have had three cycles, so far, of Lutathera, starting in December 2022. and have my fourth at the end of May.
I was originally diagnosed in Jan 2020. I have an unknown primary and tumors in my liver, pancreas, adrenal gland, lungs, parotid gland, and bones. Based on biopsies, i actually have tumors of all different grades, but mostly grade 2 and 3. At that time, based on results of my PET DOTATATE scan, I was not a good candidate for Lutathera treatment. Many of my tumors were just not soaking up the tracer well enough for it to be effective. So I had two cycles of CAPTEM, which didn’t work at all. I had significant progression. Over the next two years, I had 10 rounds of FOLFIRINOX, which stabilized my cancer and actually shrunk some tumors, and then 50 rounds of FOLFIRI (had to stop oxaliplatin due to neuropathy). I was stable until September 2022. I had another PET DOTATATE scan at that time, and my tumors were soaking up significantly more tracer than they did back in 2020, which made me a good candidate for Lutathera. I also get a sandostatin shot with every treatment but no mid-cycle shot.