Stubborn PSA

[Brendan1904]

Hi everyone,

I'm looking for anyone who can relate to having treatment but their PSA nadir never getting down into single figures. I haven't come across anyone similar yet?

It would be nice to be able to compare how they are progressing/progressed.

At present my aches and pains I put down to age and probably running around infrequently (about every 3rd day after our 3 year old grandson) rather than regularly. I try to go for a leisurely walk most days. Some days it doesn't seem a problem to walk a mile or two or even more. Other days the end of the road looks a long way off but just putting one foot in front of the other gets me there.

It is nice to read success stories on here but also important to try and stay realistic.

Hope to hear from someone similar.

[Foxewolf]

Hi. mine has never gone below 115 now at 168

[Brendan1904 in reply to Foxewolf]

Thanks for your reply and good luck with Lutetium.I have been on Xtandi (enzalutamide) for nearly 18 months now which got my PSA down to 36 eventually. Sounds like that is good compared to yours. Hopefully we will both find something that works going forwards.

[Tall_Allen]

Have you had docetaxel?

[Brendan1904 in reply to Tall_Allen]

Not yet. During Covid Xtandi was offered upfront instead of docetaxel.

[GSDF]

With a PSA down from 434 a year ago I went on Firmagon which rapidly took me down to 36. Then things began to slow down and PSA leveled out at a nadir of 6 and then back up to 24. Now switched to Orgovyx and Xtandi and those took me down to 2 where I've been for past 3 months, stable at 2.

Some say stable and low is good, others are saying it indicates Xtandi is likely also failing and I'll likely be going back up again....So I can understand your question albeit your nadir is much higher than mine, I assume you are holding and not going back up which I would think is a good thing, as I do in my own case.... I share your concern and wonderment... ..Blessings to you brother...

[Brendan1904 in reply to GSDF]

Thanks for your information, Yes I think similar to you that stable is better than rising. I always try to think in simple terms. I guess my high nadir implies there is a lot of cancer in my system that is resistant to the Xtandi and Prostap that I am on. While it remains stable the cancer is not progressing but once it starts to rise I guess it might be rapid. With your lower nadir I guess there is less resistant so will be longer before yours develops hopefully.Did your consultant suggest the change to Orgovyx or was that you pushing for it?

Take care and praying that your readings stay low for many months yet.

[pakb]

Aug 2017- My husband was PSA 677 at diagnosis (G9) with multiple mets. PSA was likely higher because he was given bicalutimide for 2 weeks before a PSA was even done. (A whole other story- awful urologist trying to save his own butt.)He dropped to 25 PSA after 6 rounds of docetaxel and ADT. (He started that regime immediately in Sept 2017).

This month, over 5 years later, he has finally hit 1. Lowest yet. He has steadily but SLOWLY gone down. He had a few blips up in PSA but never a trend of 3 or more rising numbers.

[pakb in reply to pakb]

Brendan1904 you don't have your diagnosis/treatment details in your profile- that usually helps people answer.

[Brendan1904 in reply to pakb]

I think I have managed to add it now.

[pakb in reply to Brendan1904]

I also think stable is better than rising. In the first couple of years I was worried that my husband's PSA was dropping to below 1 or 'undetectable' like others- but his scans looked good and his PSA never trended up (our docs say trending up is 3 times in a row).

[Bspouse in reply to pakb]

Your story is encouraging. Hoping husbands PSA keeps dropping for another few years.