My Dad was unfortunately unable to join the DB-1311 trial because he developed extreme pneumonitis from Keytruda that landed him in the ICU for 2 weeks about 2 years ago, so he is no longer able to use any immunotherapy treatments moving forward.
We have exhausted most options now but have lutetium and carboplatin left. He completed the pretreatment scans and they weren't great. Last year he had 7 spots on his ribs and one on his spine, this last scan shows in one year there is almost no part of his skeleton without tumours. 💔
My Dad had his first treatment last month with no side effects aside from tiredness and his PSA at 450 and this week he had a new scan and bloods which show his PSA has dropped to 300 but his tumours appears to have significantly advanced. I've heard of PSA increasing and mets shrinking but not the opposite. Has anyone heard of this happening?
They are allowing him to try another round in 4 weeks but the MO would like to add enzalutamide. Has anyone had success with the additional treatment added?
My Dad has already been treated with enzalutamide but timed out on it after 5 months however the MO said he would like to try it. My concern is that the additional treatment crosses the blood-brain barrier and can affect coginitive function (which it did last time) and am going to ask if we could use darolutamide instead.
I felt hope until this point now and feel sickened with these last results and the decline I can see in my Dads personality, energy and mobility.
Thank you for any insight and advice.
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Stefciaa
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I used Darolutamide for a month before and during two Pluvicto treatments. The combination brought my PSA from 45 to 3. The ARIs increase PSMA expression to hopefully give the Pluvicto more proteins to latch on to. My PSA kept going down for three months and as it started shooting back up I’m restarting the Darolutamide. I stopped because of lymphedema that seemed to be provoked by the drug (and also tried enza and abi). I believe it’s worth doing.
Sorry to detour this string; wondering if I could ask where your lymphedema manifested? Only at radiation sites or elsewhere ? I’ve developed mild swelling in both legs and doctors are stumped. Had salvage whole pelvic IMRT in 2019, and taking Darolutamide only the last two years. So little SE history on the newer Daro drug, we’re wondering if that might be a SE as you suggest
Wow, sorry to hear about your difficulties but thank you very much for the info. Looking back I also had significant swelling in one testicle after starting Daro (which is resolving after taking first drug vacation) but didn’t make the connection. Daro has been very effective keeping castrate sensitive metastatic PCa in check (PSA<.01) for years, but appears the potential SE profile still needs to be developed.
Also share your pain about loss of endurance and shortness of breath - BC and downhiller here.
Darolutamide is a good drug but I think they each take their little cut out of my endurance. I’m still determined to ski, even if it’s just one run. Thanks for the kind words and all the best on your journey!
When PSA goes down as radiographic expression increases in heavily treated men, I suspect that a type of prostate cancer with lower PSA expression is beginning to appear. It may be a good idea to get an FDG PET scan in addition to the PSMA PET scan for the reasons discussed below:
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