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@charly55 Short story is that it all went pretty much as planned, but was more like a chemo experience than I had hoped.

I had 5 total infusions and got my RALP two weeks after the last one. The first two infusions were low doses and I had basically no side effects. I was wondering if my immune system was reacting at all. That question was solved after my first full dose when I spiked a fever the evening of the infusion. Careful what you wish for and all that. Fever was nothing crazy - 101, but above the threshold to call the nurse hotline, so it was off to the ED for me since they take cytokine release syndrome very seriously. All tests were fine and fever resolved pretty quickly with some additional dexamethasone (steroid and immune suppressant), but they wanted me to stay another night. Not the end of the world but these are the same challenges with the drug in its first trial and its no fun to get even more IVs, tests, etc. I thought I'd be in the clear after 4th infusion, thinking my body was getting used to it, but 3 days after the infusion, I got a another fever. Same story as before ED in the evening plus another night for monitoring. Last infusion didn't need ED, but they kept me taking dexamethasone for the infusion, which is an optional thing because it offsets the effectiveness of the immunotherapy.

So besides the risk of hospitalization, I got quite a bit of fatigue and lost a ton of fitness, although it's hard to say how much was the Orgovyx vs the study drug. And it was hard to sleep. That was probably due to the dexamethasone which, I ended up calling my "meth" since it seemed to amp me up. The dex also spiked my blood sugars a lot which was mostly OK but might be a concern for diabetics. I also got anemia, but not to the point where they wanted to treat it. PSA went from around 7 to .2, but again, most likely from ADT mostly. So, all that said, Xaluritamig wasn't the easiest but I knew the main risks due to seeing the first Phase 1 trial results, and the negative impacts all seem to be transient.

The study included a post-infusion MRI prior to RALP and that showed markedly smaller tumors - to the point where I went from PI-RADS 5 to not even qualifying for that scale. Caveat is that I was also on ADT starting a month before the Xaluritamig and it is known to have that effect. But, margins and nodes were all clear, which is great for my gleason 9, PNI, and ECE. Post-surgical biopsy showed confirmed PNI and Gleason 4 with cribriform and Stage T3a. My original biopsy showed some Gleason 5 too, but doc said after ADT, everything looks like gleason 5, so they don't call anything 5.

Now 6 weeks out from surgery, first PSA was <0.1 and bodily functions are recovering nicely. I did the study in hopes of preventing BCR years down the road, so the jury is out for me. I think massive success for Xaluritamig would have been for the prostate to show no viable cancer, but that would have been pretty much magic with a solid tumor and a couple months of treatment. What I do know is that my immune system reacted strongly. What I hope is that I never get BCR, but like many here, will have to watch and wait.

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Replies to "@charly55 Short story is that it all went pretty much as planned, but was more like..."

@zerostarhobby so you are part of a study that used this PRE surgery, right?
Any particular factor in your pathology call for this, rather than just Orgovyx alone?
I wonder if Joe Biden has been given this seeing how he is now metastatic castrate resistant…
Good luck going
Forward..,
Phil

@zerostarhobby

Thank you for sharing. This is very interesting to follow. I'm also treated at Fred Hutch.