Interested in hearing people's experiences with PRRT

@klpetts , Hi I read your posting of April 2020 that you were heading off to have the PRRT. Wonder if you mind sharing your experience of having PRRT?
My son was diagnosed with pNET of pancreas 4 to 5 cm affecting the duodenum and tumors were also found on nearby lymph nodes. The tumor was diagnosed as Grade 1 to 2. As we were not aware of any other alternative treatments, he has signed up for PRRT. Reading the posting from this Support group, it seems like other alternative, say Lanreotide injections... Can offer shrinkage of the tumor without all the possible Radiation potential danger to the blood cells. Hope PRRT is not an overkill in my son's case.

@klpetts. I read your other postings inr the past few days using 'search'. Sorry to know PRRT did not work for you. Hope your new chemos work for you. Good luck.

A quick update for my wife is doing ok, 90 day checkup after surgery showed no new growth in liver. Our team is suggesting PRRT treatment while the NET is at its lowest amount to try to knock it down even more August 30, so I’m also wondering what info anyone can share on PRRT?

Husband was diagnosed in Nov. of last year with low grade neuroendocrine carcinoma which started at the duodenum and metastasized to the liver. Jan. of this year started lanreotide injections. This went well until last month then pet scan showed liver had multiple tumors and they had gotten bigger. Now he is supposed to start lutetium Lu-177 dotate infusions. Would like to know if anyone else has had this and would like to know life prognosis. I know no one knows for sure but God thanks

Hello,
I just finished my third round of Lutathera treatment. Each treatment takes 5-6 hrs, no pain or radical side effects. Most of the time is for Amino Acid infusion to protect Liver and Kidneys before and after Lutathera.
I can't measure the effectiveness of the treatment until I have a scan done after the 4th and last infusion.
I still have carcinoid symptoms, but they seemed to have diminished. Studys done with Lutathera indicate
a very positive success rate. Some as high as 70% in stopping tumer growth or reducing size. You'll have to do the research. I have several metastatic carcinoid tumers abdominal and liver involvement. If this doesn't work
I'll probably go back on Everolimus.
Good Luck
Thanks
John

Hello @sop and welcome to the NETs support group on Mayo Connect. I see that @lyons1234 has responded to you about his experience with Lutathera. I'll ask @kim1965 to also post with you regarding this wife's experience with PRRT treatment.

I am sure that others will also respond with their experiences. Please read through the posts here. I'm sure you will learn something about this treatment for NETs.

What are your thoughts and questions as you and your husband anticipate this treatment?

Lyons1234
I just read your post I see you were on Everolimus
I am to starting next week
My NET of unknown primary is spreading it is in a liver lymph node and now my spine
Please I have done my reading on side effects and success rates
I need to find someone who has been on the medication and see what they did to help with the side effects and of course to hear there story of how the drug worked
Thank you

Side effects. Response to drug as to stopping the spread and enlarging.

Our case has moved from diagnosis of mass on pancreas with spread to liver. Kim finished 9 months of chemo which was very successful reducing size of tumors in both areas by 80%. We continued the Lanreotide until recently, switching to Octrecide. We have completed 1 of 4 PRRT treatments. She has generally tolerated the first treatment. Our medical team thinking was to do the PRRT now while the cancer is at its lowest state to get it at to a stage that we only have to monitor it and and as growth occurs again, the best course of treatment will be done. We also are going through the process of getting approved for a Liver Transplant as a option for now, so if that is the best course of action we are all set. The reasoning for transplant option is if the cancer is only in the liver,, the opportunity to potentially remove all the cancer will be considered. Either way our long term prognosis is good as our team hopes to keep moving this cancer down the street for decades. Hope that helps you, we all got this! Let me know how we can help further.

Hello! I just finished my 6th round of Lutetium LU-177 dotatate as part of the Compose trial. My primary was a PNET. I had a distal pancreatectomy and splenectomy in early 2021.
We found Mets to my liver in fall of 2022. Thirty to 40. I have scans next week so I will know more then, but Dr. Halfdanerson is very pleased, I think. So far there has been slight shrinkage in most of the marker tumors. It's only a couple millimeters but I'll take it. They haven't seen new tumors. The hope is that the therapeutic benefits will continue for some time. I will try to post an update next week after scans. Happy to answer any questions. My best to you!
Linda