Waiting for the Numbers...

@stage4lovolmetpc - Beautiful country up there. Used to fish Rondout when I was a kid. You're only about 90 miles from Memorial Sloan Kettering in Westchester to the south or Albany Med. to the north. Sounds far, especially for an upstate country boy but, it's cancer man.

Thank you all for your comments. I am considering all options, will continue the ADT, find out the new numbers next month and directly ask the MO what he has in mind for treatment. In the meantime, am I correct in believing that the ADT will slow further metastasis and also stop/shrink the existing PCa? How long can I expect the ADT to keep working effectively? When it does quit working and the cancer becomes "castrate resistant"
what are the next steps to treat PCa? Again, thank you all for the time spent replying here and yes mjp0512 it is beautiful up here, Ill be out in my canoe for the first time this year today, the ice went out yesterday and Im looking forward to chasing the ducks, geese and a beautiful pair of white swans around the pond. Im not far from Oswego NY....Lake Effect snow is our claim to fame...lol.

So no, those of us with metastatic prostate cancer are no longer just sitting around, waiting to die after the ADT stops working. Things have changed a *lot* over the past few years.

It sounds like your cancer is still castrate-sensitive and is responding well to doublet therapy (Orgovyx + Abiraterone). Metastatic castrate-sensitive prostate cancer (mCSPC) is a pretty-good place to be these days, relative to the past. They used to automatically consider it a terminal disease, but there's an increasing belief in the oncology community that it might be turning into a chronic disease — one that can be managed for many years or even decades, like diabetes, HIV, or Parkinson's. The cribform does raise the stakes a bit, as far as I understand.

You're only 31 days into doublet therapy, and you've already had a huge PSA drop. If that continues over the next couple of months, I wouldn't give up saving for retirement quite yet.

Some notes:

1. Doublet therapy with ADT+Abiraterone provided very effective for mCSPC in the STAMPEDE trial, but doublet therapy with the -lutamides (Enzalutamide, Apalutamide, or Darolutamide) did even better in their own trials. You can progress to a -lutamide if/when the Abiraterone stops working, but you get most of the benefit if you use the -lutamide right from the start; unfortunately, the -lutamides are very expensive — like $12K+/month — so in the U.S. you need good insurance.

2. As @jeffmarc mentioned, metastasis-directed therapy (MDT) is rapidly becoming standard of care for mCSPC. You're right on the borderline between oligometastatic (treat with radiation) and polymetastatic (treat with chemo or Pluvicto), but the idea is to attack the cancer with everyone they've got *now*. That's a big change from a few years ago, when they'd gradually escalate the treatment, always trying to keep something up their sleeve so you wouldn't lose hope, but the "shock and awe" strategy is proving more effective.

3. For low-burden mCSPC (oligometastatic), research also suggests there are big benefits from radiating the prostate itself, but the same benefits haven't appeared for high-burden (polymetastatic). Again, I'm not sure I fully understood your posts, but it looks like you're near the borderline between the two.

^^^ None of the above is meant as advice (I'm not qualified), but just as questions to raise with your oncologist for a more-informed discussion.

@northoftheborder
Thank you North, for taking time to reply....yes, I am sensing (and will ask in 5weeks) that I am past radiation (the Dr said "no radiation" a couple months ago) and after reading my own pet scan report / biopsy, I think with 17 active nodes of PCa, (16 outside the prostate itself) it means chemo or Pluvicto is in my future. I am not worried or stressed, just trying to educate myself as best I can. I just looked up ADT effectiveness over time and it goes from months to years. Im in no hurry to get to the finish line...lol.
Saving for retirement? Another laugh, I am 72 now, retired at 55...... and so glad I did. Still having a great time working/living on my land, I have a 1/2 mile long driveway and a steel gate I lock everyday at 2pm, walk down with the dogs at 6am to open it. Life is good here in my woods ....Thank you North, I have read your posts for months now and admire the way you have overcome your obstacles. I think you (and jeff, brian, mjp phil, others) are well qualified to give advice considering your (our) collective experiences. Im looking forward to next month, asking the MO questions and getting those new numbers.
Come on snake eyes! Give me a pair of ones!

@stage4lovolmetpc - Further north than I assumed. I thought you were talking about 55A around Rondout Reservoir. Enjoy the pond.

@stage4lovolmetpc Yes, I hadn't counted in your post, but 17 metastases is definitely polymetastatic, not oligometastatic. It's not so much beyond anything as just a different optimal treatment path.

There has been a lot of excitement around "triplet therapy" for people in your situation: ADT + an ARSI like Abiraterone or a -lutamide + chemotherapy all at once, instead of in sequence, to send the cancer reeling right near the start.

Dr Eugene Kwon at Mayo has been one of the biggest advocates for triplet therapy (vs the old approach of gradually escalating treatment). I think you can find videos on YouTube of him discussing it, and it sounds like it might be what your oncologist has in mind as well.

Best of luck!

p.s. I grew up not far from Oswego, on the Ontario side of the lake.

@stage4lovolmetpc I'm closing in on 5 years since de-novo stage 4b diagnosis, and my cancer hasn't become castrate-resistant yet. Don't assume it's inevitable anymore – doctors are often working off old SEER data when they give patients a timeline for that. 😕

I know I've been lucky, but the new ARSIs (the -lutamides) created some of that luck for me, as did metastasis-directed therapy in 2021, so science deserves its share of the credit.

Well, here are my new numbers: T is 20 and PSA is 0.67 after 60 days on ADT. So....T has stayed the same as last month but PSA is way down from 2.8. Talked with the MO and asked more questions this time, he said no radiation and no chemo. Stay on the ADT till it quits working then move on to another drug that will, he has had patients that went 5 plus years on ADT. Here are the numbers he provided: stageIV (cT2, cN1, cM1a) GG4. I looked these up and AI tells me this is Pca, distant mets, bone. Dr is going to start Xgeva/denosumab next month. I looked up the side effects of that and as usual they are intimidating. I am also listed on his chart as "palliative". So that is the story so far. Still working in the woods, felling big oaks and cherry trees , blocking, hauling, splitting and stacking firewood. Running the dogs, walking the trails, keeping up on all the work that needs to be done here. Dr says I am the fittest cancer patient he has. Lol. Dont know if I believe that but Ill take the compliment. I still come here everyday to read the posts and am amazed at the information available. Let me say that I really appreciate the posters that write about how they feel and deal with this cancer on an emotional level. So many eloquent writers. Well, that is all I know, now I wait for next months numbers.
Thanks for reading this post, Ill be reading yours. I wish all of you the best. Opinions, observations and suggestions are always welcome.

Correction:.....stage IVb......

@stage4lovolmetpc
It’s good to hear your numbers are getting down. You’ve only been a couple months so they should go more.

Yes, chemo is what many doctors would do with someone who has The number of Mets you have, But I am puzzled as to why they only put you on ADT. Normally, you should be on doublet therapy, which includes an ARPI either Zytiga, Erleada, Nubeqa or Xtandi. I would ask your doctor why you aren’t on doublet therapy. Just about every center of excellence would say that is what you need, Staying on just ADT can make you become castrate resistant while adding that ARPI can delay that time for quite a while. It also would get your PSA down further. It isn’t low enough right now,, hopefully it will become lower in the next month. I know that a PSA around where yours is at allowed my system to create a Metastasis on my spine which I had to get zapped with radiation.

You might talk to him about going on Nubeqa. It has no side effects for The majority of people I know on it. It works well with chemo, So being on it would prepare you for that.

I just wonder if you need to get a second opinion. The standard of care is for you to be on at least doublet therapy if not triplet therapy. That would get you the best chance of having long-term remission.

Some things to think about, Not telling you what you have to do, but just telling you what is normally done.