Was diagnosed March, 2024 with Stage IVb PCa with mets on pelvis, right hip/leg, sacrum, ribs, 2 vert., several lymph nodes and of course prostate after April 15, 2024 PSMA-PET. Went on Orgovyx, Nubeqa and Docetaxel (6 cycles of Dox). PSA was 54 at start, went steadily down to .09 in late August when Dox ended. Stayed on the Orgovyx and Nubeqa but PSA started creeping up from September, .1, 1.0, 10.0 and 55 in December. Did a Guardiant360 in December, 2024 and found a mutation inhibiting the AR receptor drug (Nubeqa) from working, so basically the Docetaxel did most of the job. Had another PSMA-PET on Dec 15 and it showed the lymph mets were gone, no uptake in the Prostate, some scattered mets on pelvis and R Leg but two 'hot spots' on my right hip and sacrum, seems the chemo did not touch these. I saw my MO yesterday (Jan 21, 2025) and he's putting me on Cabizitaxel. I asked him, the fast PSA rise has to be coming from some where, especially so fast, figuring the two hot spots on the hip and sacrum and suggested maybe some SBRT to cool them off, the answer was something I did not expect. He said we should hold off on SBRT and stick with the Cabi as the Taxo worked well on me and that I 'may' have a 'hidden' tumor that the PET scans weren't seeing. I was floored, I do my research and understand this pretty well, not as good as many more of you on here, but I have never heard of a 'hidden tumor'. If it's cranking out that much PSA to get me up to 55 so fast (5 day doubling he said) how can it not be seen...? I'm lucky if I get 10-12 minutes with him, so I have to pick and choose my questions with haste. My doc is great and we've been in lock step as far as treatment options, but I personally still think some SBRT on the two hot spots would be a safe choice but now I really worry about this 'phantom tumor' that 'may' be there. Any light on this would be greatly appreciated...! Thank you...!
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LVMonsoon
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"I have never heard of a 'hidden tumor'." He means metastases that do not express PSMA but do express PSA. It's rare, just as your Nubeqa-vulnerability is rare.
"I personally still think some SBRT on the two hot spots would be a safe choice." It might lower your PSA, which might provide false confidence and do nothing to increase your survival. I think cabazitaxel sounds like a better bet. See this article about the perils and pitfalls of treating PSA instead of your cancer:
TA, that link is a tremendous primer, thank you for the work you put in. I am pretty clear-eyed by nature and profession so my husband has outsourced to me the job of being educated enough to partner with his medical folks. Your compilations of information are very much appreciated.
Big thanks for the 'reality check' re treating PSA vs. the cancer. I still have have thoughts that the big uptick in the PSA is coming from the two 'hot spots' but I guess doc knows best and we'll see how the Cabazitaxel works out, hoping as well as the Docetaxel did. He wasn't too sold on the SBRT right now, but he kept preaching 'let's stay systemic', for now.....
Hi Allen, just a quick question related to this thread you responded too. I I had mentioned about my PSA 'soaring' from .09 to 55 in a couple months after docetaxel (Dox worked), Nubeqa fail. My MO said it was doubling about every 6 days (last PSA 55 on 1/6/2025) and expected a very high number next PSA check (1/28/2025). Well, to my surprise, the 'soaring' stopped quite abruptly and went down to 50 and my ALP came down too. I'm just on Orgovyx now and just started Cabazitaxel yesterday. On the surface, it seems to be some kind of positive sign but don't want to read to much into it yet, you thoughts please...!
PSMA negative tumor can be detected with an FDG PET/CT. I think your oncologist prefers to treat patients with chemo.
I would try to lower the PSA value by radiating the two mets with SBRT. This trial showed that the hormone therapy is effective for a longer time if you treat the mets: urotoday.com/recent-abstrac...
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