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PRRT and lanreotide questions

Posted by susan481 @susan481, Jul 9 2:31pm

My partner is grade 2, stage 4 PNET diagnosed Jan 28 2025 and post start of lanreotide (3 months) showed growth still. Starting PRRT shortly.

It would help her to have some sense of a) if others had lanreotide fail and went to PRRT and anything people feel comfortable sharing about how long your PRRT has worked …

The uncertainty is hard.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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Mentor
Turkey, Volunteer Mentor | @tomrennie | Jul 23 2:29pm
In reply to @kjstein "I finished 4 PRRT treatments in January 2022 with significant reduction of tumor burden in liver...." + (show)
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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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I agree with you on just keep moving. Though difficult at times, the more that I move the better I feel.

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dbamos1945 | @dbamos1945 | Jul 26 1:38am
In reply to @kjstein "I finished 4 PRRT treatments in January 2022 with significant reduction of tumor burden in liver...." + (show)
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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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@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

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bren1 | @bren1 | Jul 26 7:28am
In reply to @dbamos1945 "Those that have had 4sessions of Lutathera PRRT: How long were you feeling good with no..." + (show)
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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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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

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