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PRRT and lanreotide questions

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

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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!!!!

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Replies to "I finished 4 PRRT treatments in January 2022 with significant reduction of tumor burden in liver...."

I agree with you on just keep moving. Though difficult at times, the more that I move the better I feel.

@kjstein: I wish you repeated success reducing your tumors, and years of happy living.
NETS reminds me of that hammer/mole game where one pops up and you hammer it down; however another mole pops up across the table and it keeps repeating.
In our shoes we were lucky to have reduced our tumors with PRRT, but deep down we are expecting the need to beat down progression again! Enjoy the good in life while we have it! If you have a chance, I would love to know what your next treatment will be and how you are feeling. Best to you… Bette