I haven’t been posting recently (even though I read religiously), and that is mainly because no news is usually good news. Dx Halloween 2017, Gleason 8, tumor outside the prostate, bone and lymph node Mets in pelvic area. Had Docetaxel followed by 42 sessions of radiation. Started Zytiga as soon as Chemo was done, so we hit it hard.
Have had undetectable PSA for two years and an ADT vacation for the last year. Living with noticeable side effects from the radiation, but the operative term for me is living. Spending an extended summer at our second home in Montana and got my MO to agree to let me get my blood work done here and have a video appointment, which is set for Friday.
I have a few concerns despite the good PSA test. My Alk Phos., which bottomed out at 50 about 15 months ago, has been creeping up steadily and is now at 118, still in the normal range but concerning. Does anyone have a comforting or other explanation. Does it make a difference that my original bony Mets were Lytic rather than Blastic? My MO has said the presence of Lytic lesions originally was unusual but not clinically significant in his mind.
Lastly, my T is stuck on low. It recovered to 75 after I started the ADT vacation, but has stayed there. That’s enough to eliminate hot flashes but doesn’t provide any other benefits. I still have fatigue and am unable to regain any muscle. Should I ask for T supplementation?
All that said, I feel blessed. I’m 70 and hope for a lot more active years .
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Canoehead
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I think it would helpful if you could get the ALP isoenzyme test which tells you specifically where the ALP is coming from since it is made in more places than just the bone. This test shows how much is from the liver vs. bone so you know specifically what the source is. Here's more information:
With confirmed bone mets you might ask your doctor about the feasibility of one or the other of the bone protective agents Zometa (zoledronic acid) or Xgeva (denosumab). Perhaps monthly to start, then tapering off to every 3 months after a while.
I have rising ALP from about 70 pre-dx, to 117 now, with n/d PSA for the last 10 months. Uro says no problem if ALP's in the normal range, but the rise is disconcerting. This study linked a T-level below 250 to higher ALP because of high bone turnover due to osteopenia/-porosous.
I bet that’s the answer, because when I went on my ADT vacation, I thought my T would recover to normal levels, so I stoped taking the calcium supplement I had been taking. The slow ALP increases started after that. Thank you so much.
So it sounds like cancer treatment has worked well for you, but now you are considering treatment for the treatment-disease (hypoganadism)? I think I would also consider TRT to get the T back up, too, now that there is a bit less concern of that fueling the PC. (Less concern, but not NO concern?)
Even if I didn't do the T therapy, I might think about estrogen patches. Those may not help with muscle mass, but might help with some other issues, since your T is low enough to suppose E2 levels are low, also.
First of all, you need to check Bone Specific Alk Phos (ALP) because with total ALP we can not know accurately how much is coming from bones and how much is coming from liver.
Yes..it makes a difference...OsteoLytic lesions are more serious than OsteoBlastic lesions..one ..lytic generally indicates more aggressive form of PCa. whereas blastic generally indicates regular, garden variety Pca. Lytic are more likely to cause fractures.
So far, in last 3 years, you have done well and hopefully you will continue the same path. Best wishes.
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