Thanks to everyone here, there is obviously a ton of stuff related to PC on the Internet, but reading first hand accounts on various issues has been a godsend and I appreciate everyone's candor. I will try and keep this short, but I have a question related to my small journey.
I presented with Stage IVb PC in March, 2024, came out of nowhere. I have had a PSA test yearly from 2015, all in the 'envelope' of normal until late 2023, my PSA went from 3.6 to 12. PCP sent me for a CT of my Prostate and it showed quite a mess of Mets. Next stop the Urologist, biopsy, Gleason 8. Finally got an MO that was highly recommend in early April, 2024, PSA now 54. He immediately scheduled me for a PSMA PET scan in mid April, 2024 and it confirmed, as he so subtilty put it, that I had a 'heavy load' (pelvis, right leg, few ribs, some lymph nodes, etc.). He immediately put me on Orgovyx. Two weeks later Nubeqa. Early May, 2024 we had the discussion about Triplet therapy and I had already done some research on it and agreed, so we started the 6 rounds of Taxotere. It was rather rough, but not dibilitating, I was lucky. My PSA started droping quite impressively, from 54, 43, 10, 5, .75, .44, .28 and on my last round in late August, it was down to .15. After the Taxotere, it went down to .1 in early September, .09 in late September, .14 in late October and today, November 27th, it spiked to 1.05 (all along staying on the Orgovyx and Nubeqa). I had already been scheduled for another PSMA PET for early December to see if their were any 'hotspots', but I was not expecting (or hoping) for such a spike in the PSA. My next appointment with my MO is in 8 days, so I'm trying to speculate what's going on. I'm pretty certain there has to be some 'hotspots' going on, so it looks like perhaps the ADT is not quite keeping things 'at bay'. Anyway, any insights or advice would be greatly appreciated. I'm trying not to over-react, but every twitch, tweak or minor discomfort get's be worrying and this big spike in PSA probably has me overthinking this to much. Big thanks for reading and/or responding, I greatly appreciate it...!
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LVMonsoon
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Since you are now officially mCRPC, you have several options. The one I favor is Xofigo+Provenge+abiraterone+Xgeva/Zometa. To understand the synergies, see:
Big thanks Allen, I have (unfortunately) some reading now over the holiday. I had so much hope that the Triplet road was the right one to get on, it seemed so until today. Appreciate your input VERY much...!
Well, it did work extremely well for 7 months, I almost feel normal the past couple months. Was almost too easy, few pills a day, 6 months of Taxotere, thought it was licked… New challenge now I guess, will be an ‘interesting’ chat with the MO next week…
Well, my MO added Genetic testing right before my PSMA-PET this week, so having to try and become literate in the genetic testing world quickly. MO is still keeping me on the Orgovyx and Nubequa until I see him next week. I also found your suggestion interesting and will discuss with him next week, thanks for the advice, much appreciated...!
Hi Allen, I wanted to pass by the latest info since we last messaged. I went in to see my MO yesterday (12/12) and the results of my 2nd PSMA-PET weren't super, but not bad either. Upside, all my lymph nodes that were involved are now clear as is my Prostate. Still showing 'bony mets' in Pelvis and right femur, but much of it is now 'sclerotic'. I still have hot spots in my right hip and sacrum and my L12 & L4 vertebrae reduced in radio... uptake a bit. MO was concerned that my PSA went up from .14 to 1.05 a couple months after the taxotere so he ordered another PSA and CMP yesterday, well, in 17 days since last PSA check, PSA went up to 4.05 from 1.05 as of today (12/13), not good. He was talking Xofigo (as you suggested) yesterday (12/12), but now still waiting for the Guardiant 360 results to arrive (maybe later today). He seemed relatively OK on how things were going, but with another big spike in the PSA so quickly, he wants to see me next week again after the genetic testing results arrive. Anyway, your kind thoughts are appreciated....
Coincidently, today I was with a patient in a very similar situation on a visit with his oncologist. His oncologist was willing to combine docetaxel and Xofigo. He is contacting Michael Morris, the lead investigator of the trial at MSK.
Thanks Allen, not familiar with this trial. I've been through 6 rounds of Docetaxel, it got me down to .09 for a while. So, are we talking doing the docetaxel again along with Xofigo. I think the worse part of the chemo wasn't actually the chemo but the Nulasta they gave me, at least for me, nasty stuff... After seeing and talking through the PSMA-PET, I just don't see how it could rise so fast after only 3 months, but I'm just a 'rookie' at this...
Hi Allen: You're so good at answering everyone, I know that it's probably impossible to keep track of everyone. You did though ask me a question about my Guardant 360 test that was taken 3 months after my Triplet (Orgovyx, Nubeqa and Taxotere). MO just got the results earlier in the week and told me that I had a mutation that did not allow the Nubeqa to work at all, everything else was OK. Now, it looks like Jevtana and Xofigo starting next month, but he did still keep me on the Orgovyx.... Big thanks always for your thoughts...!
Hi, the same thing happened to me with Docetaxel. I completed 10 rounds and my PSA continued to decrease until I stopped. Then PSA started to rise again. I’m now on Pluvicto.
Thanks Carguy, wow, 10 rounds, that had to be 'fun' (not)...! My PSA didn't wait too long to start going up (.14 -1.05) in a few months, though I don't quite know how alarming that should be. Getting another PSMA-PET and Genetic test in a couple days, guess we'll know shortly. How is the Pluvicto working out for you...?
Pluvicto is working well for me. After 4 treatments, my PSA dropped to undetectable. I then took a 5 month break from the Pluvicto (but continued with Orgovyx ADT). Recently, the PSA started to rise again, so I just completed round 5 of Pluvicto and will complete round 6 on Dec. 18th. Wishing you the best.
I would look into Pluvicto also. I would see how the PSMA scan comes back....Pluvicto only works against psma avid cancer. Do your research....the best to you!!!
how can I help you. I’m not familiar with the triplet myself but did do 6 rounds of Taxotere at the start of my treatment. My oncologist switched me to a combination of a bone shot and an anti hormone shot every 28 days with Xtandi every day. I’ve been on xtandi now since Dec 2016 and my Psa has stayed at 0.05 ever since.
Sorry but I can't give you any medical advice/information. However, I would recommend that you update you bio. You may want to glean some info from your posts and paste that into your bio. Also maybe a good idea to mention your location and where you are being treated. All info is voluntary.
P.s. Remember, it always seems darkest before the dawn.
You're come to the right place for information and comradery, so keep on posting.
Thanks APK3, actually, my MO just ordered up a Genetic test for me. I've researched PC to exhaustion, but will have to try and understand the Genetic testing as initial looks at understanding it look daunting... Big thanks for reaching out...!
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