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PRRT and lanreotide questions

Neuroendocrine Tumors (NETs) | Last Active: Jul 26 7:28am | Replies (13)

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Those that have had 4sessions of Lutathera PRRT: How long were you feeling good with no tumor progression after your PRRT treatment?
I’m 6 months from last PRRT treatment feeling more “normal” but still easily fatigued. Need to learn of your success time.

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Replies to "Those that have had 4sessions of Lutathera PRRT: How long were you feeling good with no..."

I finished 4 PRRT treatments in January 2022 with significant reduction of tumor burden in liver. Felt progressively better over the following years. First evidence of possible growth in 2 remaining liver tumors was in June 2024--so about 2.5 years. No activity beyond these 2 sites. Have been on Affinitor (everolimus) for a year now and no new tumors or sites, but slight growth in 2 existing tumors. So some progression after 2.5 years--but no new sites and very slow growth in 2 sites only. Will decide with doctor in a few weeks if next steps will be 2 more PRRT treatments or something else. I've had minimal side effects the entire time--I do get fatigue now and then, but not like during the PRRT treatment. Exercise helps me with fatigue and other side effects. I do a 30 minute hilly walk most days and add chair yoga and home strength training sessions of about half an hour 3 or 4 days a week. I'm 78, so the intensity and duration isn't what it used to be...but just moving seems to help me a lot. Good luck, I know there are some patients with no progression for years after PRRT--may you be one!!!!

I have been about 2 years all good still just a bit a flushing when I eat certain foods. I do get a bit tired no and again but not much