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?

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

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but it’s important for you all to remember that they are slow growing and people live many years with them as they are treatable.
I had eleven years of misdiagnoses before I had a blockage in my small intestine (March 2018), and a 2 cm carcinoid tumor was found. (There went 10” of those intestines.). They immediately started me on Octreotide LAR. Then in July 2019 I had another blockage - this one in my large intestine so there went 11” of that intestine. In addition to these tumors, there are several scattered around my body - including one in my stomach that is not resectable. So in April 2021 (following a year of the pandemic that delayed my plans), I started PRRT at Mayo in Phoenix.
Following my first treatment, I had a reaction they had never seen before and ended up in the ER with uncontrollable vomiting and diarrhea, and an episode of vertigo which caused me to fall. So the team at Mayo decided to halve the dosage, which worked much better. That’s not to say I didn’t have to deal with side effects such as diarrhea, fatigue, and nausea, but they were controllable.
So fast forward to March 2022 and my GA 68 scan showed the disease was “stable” with no new growth and some decrease in size and activity. Then in July this year I had another scan that continues to show stable disease with no growth. It’s now been 2 years since I completed treatment. I continue to be on Octrotide LAR 30 mg every 28 days. I usually have to take Imodium for a day or two afterwards or if I eat something that doesn’t agree with me, otherwise life is pretty normal (for someone 74 years old!). My next scan is scheduled for January 5th.
I believe the PRRT has stabilized my condition, and fingers crossed it will continue to do so. And yes, I would definitely recommend it.
I send best wishes as you all go down this journey.