Hi Mark:

I have commented before about my experience with PRRT, so will try not to be repetitive! I was diagnosed with metastatic Nets in Liver with an unknown primary in Jan. 2021. Started Lanreotide injections immediately and when slow growth of the liver tumors was seen on subsequent scans, my oncologist at Mayo Arizona recommended PRRT. I started in summer of 2021 and completed all 4 treatments in January 2022. Follow up scans showed significant shrinkage in all sites and that shrinkage has continued through recent follow up scans--so very successful for me. The treatments themselves were not difficult--long days but no problems during the infusions. I too was told that I had some odd or not usual side effects--hair thinning (but not complete loss!), occasional heart arrhythmias, and eye floaters, all of which cleared up as treatments went on (could have been from stress!). My greatest side effect was fatigue, quite severe with the first treatment, less so with each one. But by the end, I could feel the effect of the fatigue and it took a while to shake it off. They will monitor your blood counts and they do go down over time with the treatments, but come back up pretty quickly. A few changes in food preferences and lost a couple of pounds, but no nausea. Overall a good experience for me. All at Mayo Arizona--they are terrific! I understand that there is a new clinical trial to try a new "Alpha" PRRT treatment that is being used in Europe and they are getting even more promising results with that. I believe Mayo may be participating...something to check on. There are also trials looking at repeat use of PRRT--I believe that is also approved in Europe--check on the Net Research Foundation Website for videos for patients explaining some of the new treatment breakthroughs. Much on the horizon! Hope that helps!
Karen

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