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4 treatment options from my doctor, which one should I start with?
Neuroendocrine Tumors (NETs) | Last Active: Aug 2 5:00pm | Replies (73)Comment receiving replies
Hi all,
Just curious to see if anyone has had Lutathera (IV radiation) treatment or have been recommended it?
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.
@sandy23: I began Lutathera infusions in June ‘24 and looking forward to 2nd infusion next week. It was a very difficult decision choosing this treatment but so far so good. The infusion day was nothing bad but insist on the new 2 amino acids to be used before, during and after the radioactive infusion (bc I had NO nausea). The ONLY side effect I have had is being tired, less activity endurance and sleeping a lot. Drs watch blood labs and have option of reducing Lutathera dose or delaying next infusion until blood labs improved. Medicare pays.
Sandy, all your research is correct and I believe there is more chance of destroying net cells and shrinkage of tumors without significant side effects. My goal is quality of life vs. quantity.
I would be happy to share more with the patient if desired. Best days to come…
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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.