Question from thread about life expectancy and bone mets

[alephnull]

I just read the post about life expectancy and bone mets.

So my question to those men with long term survival of more than five years.

What is your PSA doubling rate?

[Hidden]

It's going to vary for most who have survived that long with stage 4 based on how effective their treatments are at any given time.

For example, my initial PSA was 463 at diagnosis and I'm not sure what my doubling time was then, but after starting treatment it went down fairly quickly to a nadir of .19. From there it slowly started to rise and then hit a a doubling time of 3 weeks. But after starting my next treatment, Zytiga it went to undetectable and has been there ever since. Eventually that won't be effective and it will start going back up again.

PSA and it's doubling time becomes less important for long-term survivors of stage 4 prostate cancer. My doctor tells me that we are "treating the cancer, not the PSA" so it's only one factor along with imaging, how you are feeling and other tests in determining whether your treatments are working and what you need to do next.

[LearnAll]

Like Gregg said PSA doubling rate becomes less and less important with time. I concur.The real marker to measure bone situation is Bone Alk Phos. because this specifically gives you status of your bone mets at a given point of time. A bone ALP of 15 mcg/L or less practically rules out any active bone met at that point of time.

PSA may be inaccurate if one has androgen independent or neuroendocrine variant or emerging non PSA secreting cells. But Bone ALP tells any bone repair going on whatever caused the damage.

[SeosamhM]

Since "PSA doubling" refers to time, i.e., faster PSA "doubling" = "more troubling", I knew I was becoming castrate-resistant when my PSA doubling rate changed from years to months and it was on to ADT+Zytiga for me.

G57's move to Zytiga has put him in a great spot, but for me, after 18 months on this treatment, my PSA again started to double on a monthly basis. Fortunately, I responded to the little trick of changing up steroids from prednisone to dexamethasone.

I've just passed 4.5 years. I agree with these fine gentlemen and wish to re-emphasize their comments inferring that - at some point during our "successful" treatment (as determined by lack of progression) - PSA simply becomes another data point and not "the only" data point...although it will never feel like that when it comes testing day or when your PSA doubling rate is increasing.

As LearnAll relays, we need to be cognizant of the entire picture painted by our tests, e.g., with bone mets ALP levels are a critical indicator. But the reality is that PSA will always be a major focus for our MO (and insurance!) and often kicks off discussion on the next step/treatment coming up. Good luck. - Joe M.

[Hidden]

17 years..... with that said we are all different with scope of metastatic disease. We are different with strength of body and mind. We are all different with varying degrees of co-morbidity.

When I started in 2004, the numbers said essentially, 2 to 4 years; maybe five. Unacceptable to me; so I hit it early and hard with systemic treatment (chemotherapy) with Lupron/Eligard. Remained on ADT for another six years.

I am most fortunate and remain undetectable. My advice - find the best damn medical oncologist available on top of their game. I found mine at a major medical school doing research.

Gourd Dancer

[Boywonder56 in reply to Hidden]

I found mine in a state prison doing 5-10..sorry could resist j.o.h.n. has ruined me....

[Chugach]

That’s a tricky question. It’s not linear for me. I’m past the 5 yr Mark. But within that I had long stretches of undetectable PSA and also several incidents where PSA was doubling very rapidly (every 3-4 weeks). It depends on what was working and what was failing

[alephnull]

Thank you gentlemen!

I ask primarily because

1) my PSADT has steadily increased over the the years, and it is now down to 2 weeks coming off of ADT vacation.

2) I have mets in my lower back.

3) Because of how slowly my PSA is coming down after ADT vacay this time. Previously it would be back down to nadir after 6 weeks. But it's not even close this time. But my next test is in 2 weeks. So that will tell a lot.

I've been very blessed to have gone 7 1/2 years as G9 to have made it without castrate resistance.

I know, I probably worry more than I should, but I can't help that.

Thanks again!!

[Hidden in reply to alephnull]

Great post. I’m a year behind you with six years in post stage#4 dx. I’ve been on adt the entire time. No vacations so far . Good luck

[Jackpine]

The highest my PSA has every been was 110 but we have been in treatment with few breaks. If I stop treatment or treatment fails I double every three weeks.

[Boywonder56]

i do know that mine was 6.5 when biopsy orderd....i mont later was 13.5....i consider my self very lucky as if i had waited longer would probably have had different outcome....but blood in semen will get your attenrion!...b.w.