Hi Ho - anyone else on the PRINCE trial?. I started in May. Real bad side effects for a week after the infusion: no energy, feel faint, nausea, pain flares etc . Sometimes I think I'm starting to come good then comes on real bad for hours. It's real up and down.
Anyone else I've asked on the trial hasn't had any side effects. I'm at a loss for why I do. Any tips?
I'm 67, diagnosed 2015, castrate resistant. Few bone mets plus lymphs. PSA was 38 but it went up to 55 after the first round.
How soon after the treatment was the PSA test? I think that everyone using Lu-177-PSMA should get both a PSMA PET scan and an FDG PET scan.
The Keytruda can cause those side effects. It shows it's working but it can sometimes work too well, causing a cytokine storm. Make sure your oncologist is aware of your symptoms.
It would be devine if you gave us more of your bio info: Location? Treatments to date? Treatment center(s)? Doctor's name(s)? Thank you!!! All info is voluntary but it helps us help you and helps us too.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 08/20/2020 5:42 PM DST
Unlikely to be a result of Lu177 treatment going by literature and myself (I have had Lu 6x, and similar PC volume). Good trial to be part of, hang in there. Re mutations, do you know what mutations you have, or dont have, in your germline DNA or the somatic genotype of your PC?
Thanks for the replies, I'm feeling a bit better now, get up and out seemed to help & ginger for the nausea. Still a bit fatigued, but diarrhea is gone. It's strange, I know all the symptoms read like cytokine storm from keytruda/pembrolizumab but I have that a few days before the Lu177 and feel fine until a day or 2 after the Lu177. I am having keytruda on it's own in a week or two so I'll see how that goes. Oncologist put me on steroids the first time which sorted me out but I don't like coming off them so this time I just put up with it. Wasn't as bad as the first time. My PSA was at 38 before both of them, about 7 days after it went up to 70, it hadn't been moving that fast before and in fact I wasn't even suppose to have it tested until 3 weeks after. About a month after it was at 53. They did all the scans a day after Lu177, I guess to check if it went to the right place, which it did, but not sure what else the scans said. I am negative for all the genetics that I have been tested for, gallahad is one can't remember what the others were but I'm negative for them. So anyway I'll leave this here to document my experience. Might help someone.
Xtandi side effects 
Zytiga side effects 
First injection of Lu177-PNT2002 as part of SPLASH trial
Xtandi side effects
Xtandi side effects
