Waiting for the Numbers...

Posted by stage4lovolmetpc @stage4lovolmetpc, 3 days ago

Hello folks.... I am just back from the Dr and have been told that after 31 days on Orgovyx and Abiraterone my T is 20 and PSA is 2.8, down from 435 and 55.8. So looks like the ADT is working and right now the side effects are not impossible to deal with. Actually lost 5 lbs. What is more interesting is the information I gathered on this site helped me read the biopsy and pet scan results with more understanding.... here is what I learned: out of 14 needle cores 12 were positive for cancer, 9 were 4+3=7, between 60% an 95%, cribriform present in all 9. 3 were 4+4=8, all 3 100% and all 3 had cribriform present. 2 needles were benign. The pet scan: 16 (between 5 and 10mm) nodes showed uptake between 10 and 35 SUV. Of the 3 Drs that saw me during the first several months not one sat down and explained what this meant. I think it is safe to say I have a serious case of pc.... I am a good example of a bad example...lol. I am here to thank all of the people that helped educate and encourage me to get started on the ADT. I was dragging my feet, holding on to my old life instead of jumping into my new one... Dr today told me I would be tested every month, in a few months have an MRI and then another PET Scan. What lies ahead? ADT until it quits working I would guess, then perhaps chemo? Idk. Pretty happy everyday right now, I feel good, am active and enjoying life, pc sure gives a person a different view point; the moment you hear "you have cancer" everything changes.
I come here everyday to read of the travails of some and the successes of others, I am grateful for my relatively uneventful experience. Any thoughts or opinions are welcome and again, thank you all who commented to my posts and thank you to all those that post their experiences here.... good and bad.
"Misery loves company, as long as its good company" Lol....thats from a book I read about pc cancer.....thanks for reading this post...
Ill be reading yours!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for stage4lovolmetpc @stage4lovolmetpc

Brian, thank you, I for sure will ask more questions next month......let me ask one of the group right now...what is the criteria for having chemo vs radiation? It would seem I am eligible for chemo right now or soon...more than 5 mets, advanced and aggressive pc, Gleason 8? I have to say that I am nervous having radiation in a brick building off county rt 55A in upstate NY. The RO handed me a 3 page print out of possible SEs and said come back in 3 months. None of it lined up with what I have learned here....not impressed is putting it mildly.

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@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.

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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.

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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.

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Profile picture for northoftheborder @northoftheborder

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.

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@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!

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Profile picture for stage4lovolmetpc @stage4lovolmetpc

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.

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

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Profile picture for stage4lovolmetpc @stage4lovolmetpc

@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!

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@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.

REPLY
Profile picture for stage4lovolmetpc @stage4lovolmetpc

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.

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@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.

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