1. < Neuroendocrine Tumors (NETs)

Advice for Preparations and Expectations on starting PRRT?

Posted by Donna Rushing @donnarushing55, Jun 9 8:14am

I am currently preparing to begin Lutathera at Mayo in Jacksonville after showing progression while on Clinical trial CAM2029 octreotide. Fully terrorized as what to expect after enjoying 19 months of stability and great results with the pen. Don’t mean to whine.

Any helpful tips for navigating this new treatment from those who know? I have primary pNET in tail of pancreas with liver metastasis. My biggest complaint is chronic back pain.

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vinnie694 | @vinnie694 | Jun 10 9:03am

I just completed my last PRRT (Lutathera)treatment in May, I had a scan before my third treatment and it showed favorable results.. I will have a follow up MRI on the 25th of this month.
I do have tumors in my liver, but they started in my small bowels..
As for the treatments, everyone responds differently, for me I did not experience any nausea, Just tiredness, and diarrhea for a day.. It is a long day and after the treatments I received my monthly Ocreotide shots.. For me the anticipation was the the only stress point.. I hope your experience is also positive….

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zacharycat | @zacharycat | Jun 10 11:39am

No problems with PRRT, beyond the inconvenience of the radiation protocols for a couple days afterward. Hope to get it again with Alpha particles.
If you were stable for 19 months it sounds like a lower grade condition. I'm grade 3 and had less than a third of that time.

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