Rising PSA post RARP + new pet scan results
I’m new here and I have greatly appreciated everyone’s input. My husband’s PSA has been rapidly rising since his RARP in early June. We knew going in there were some pelvic nodes that were infected. Our wonderful surgeon told us he would try to remove the infected nodes during the surgery and he did successfully remove two out of three. He told us we were likely looking at follow-up radiation down the road. OK, we get it. However, the PSA since then, a few months ago, doubled and then tripled very quickly. So we were of course getting quite worried. Our insurance made us wait for THREE PSA tests before they finally agreed to cover a new PSMA pet scan. Anyway, we had that scan yesterday and I am pleased to say it detected several pelvic nodes that are infected including the one the surgeon couldn’t get out during the RARP. Why am I pleased you say? Because what we can see is still in the pelvic area. And the node that wasn’t removed had reduced its suv max value by 40% in two weeks on Orgovyx. Our oncologist gently prepared us for something worse because of the Gleason 9, cribiform, and a bunch of other very aggressive factors. We are headed for radiation + doublet therapy for two years…and one margarita each before dinner.
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Lady I'm sorry to say but you're painting a rosy picture there..for your husband. Any spread out of the capsule is metastatic spread of the cancer..not a infection and Gleson score of 9 is very serious meter. Jeff has given the right advise..please change your "wonderful " surgeon ASAP and get
the team of excellence nearest to you. Sorry to be a bit harsh but that's what boath of you need right now. Wish you both the best in this maze of prostate cancer biology.
I thought this was a support group. I deeply regret sharing important personal information here. Have a great day.
You ask...I assume you mean a drop to < .2 after salvage radiation combined with the doublet therapy?
You say he is getting radiation therapy plus doublet...
I assume the radiation treatment is SRT to the prostate bed + Whole Pelvic Lymph Node
I assume the double is ADT +ARI though you don't say which agents, useful clinical data for the forum in responding. The 24 months is in the standard range for the clinical data you describe, his medical team may be thinking 36 but want to see the clinical data at 24, then decide.
The chemotherapy was not an issue...for me. Others may not voice the same sentiment. I was in good physical shape, that may be a factor.
Yes, lost my hair grew back.
Experienced fatigue, yes, still played basketball, rode my bike, worked out at the gym...
Some nails on the toes and hands turned black and blue, went away.
Did not experience neurotherapy
My taste buds took a hit, wife would ask what I wanted for dinner, my response, well, not sure as it tastes the same...
The infusions were every three weeks. With the drugs they give you to avoid nausea, you feel pretty damn good the first 24-48 hours, then you (I) crash for 72-96 hours and the next two weeks are "reasonable."
I did experience pretty extreme fatigue with the 4th infusion, no explanation, went away.
I travelled while on chemotherapy, WBCs weren't too bad.
So, yes, his PSA decreasing to < .2 with the radiation plus doublet therapy in the first three months would be an indicator of a longer PFS...how long, nobody can say.
Kevin
@kujhawk1978 Thank you Kevin. Another helpful bit of information on our new journey. Really appreciate your kind response.