PRRT and lanreotide questions

Don’t remember the grade in our case, but my wife had stage 4. She had primary on pancreas and spread to liver. Did CAP/TEM for 9 cycles, surgery, all while on Lanreotide. That all reduced her tumors by about 70%. She then did PRRT, which help reduce her tumors only to her liver. We decided to do a liver transplant to try to assure as long as path as possible before reoccurrence, which can happen. The PRRT went well for her. You got this!

On 4 July 2023 I was diagnosed with stage 4 pNET. I had a Whipple on 31 October 2023 then spent over 4 weeks in hospital, to recover. I finally started monthly lanreotide injections in March of 2024 however progression continues unabated. I am STILL waiting for PRRT to come to my city in Canada (I hope I last that long). For context, I live in Calgary, Alberta, Canada.

They have PRRT in Edmonton I think. I would make the trip as its only for one day every seven weeks or so.
Where I live (Michigan) PRRT was available nearby but there was a waiting list. In the meantime they gave me chemo every other week and started PRRT about three months later.

https://albertacancer.ca/leap-magazine/raising-awareness-of-neuroendocrine-and-endocrine-tumours/

I got grade 2 stage 4 and lanreotide injections did not work but prrt did. Had it 2 years ago and it reduced them by 10% and have been stable since then. It will though start up again sometime I am told.

Hi @bren1. Welcome to Mayo Connect. Have you had any other treatment in the last two years to keep things stable? Where is your primary? Overall, how are you feeling?

Hi I am feeling fine overall. No more treatment just the lanreotide injections every 3 weeks now.

Sorry primary is the small intestine and secondary the liver.

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.

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!!!!