Hi Folks – and fellow travelers. I have been wondering, and reading the recent post from Canton44 about low PSA has prompted me to seek your collective wisdom about high PSA values.
I started in Jan 2020 with a PSA of 1000. The oncologist said that if I first had cancer – then a high PSA was better than a low PSA. Does anyone have any info on this?? (I wasn’t prepared for such questions the day I received my diagnosis!!)
I went on docetaxel (6 sessions) and Zoladex (for life!!) and my PSA has been steadily dropping to about 1.1 today. So I read about so many of you guys with PSA below 0.5 and changes of that order or less. My PSA curve looks like it will get to nadir at about 0.9 in about 6 months time (ie after 2 years) if things progress as they have to now. How does this fit with a normal PSA range of 4-6 for non Cancer men over 65??? I still have a prostate so how to interpret absolute PSA values. What does a nadir of 0.9 after 2 years mean compared with you guys who go down to undetectable??
Is there any info concerning the benefit – or lack of it – of reducing the ADT zoladex dose by skipping alternate injections to one every 6 months (presently every 3 months)???
My present plan is to get a full set of scans at Nadir for a baseline and stop with Zoladex for a while to see what happens (PSA test every 3 months) since we know that ADT holidays do not seem to negatively affect the progression.
Any knowledge/references out there??
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Stoneartist
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Hello, My PSA at diagnosis was just below 1700. That was over eight years ago (May, 2013). My cancer had metastasized extensively to my bones but no soft tissue involvement. I too was put on Zoladex (goserelin). I have taken this drug for seven of the eight years I have been battling this damn disease. For one year my oncologist put me on Firmagon (degarelix). Like you I was told I had to stay on the ADT train for life. When my PSA started to climb four years ago my oncologist offered me the choice of Zytiga or Xtandi. I chose Xtandi (enzalutamide). We added that to the mix and my PSA plummeted. I also take a maintenance dose of Prolia (denosumab) for bone strength and to lessen the chances of a skeletal related event (SRE). I will be 76 in a couple of months and my PSA is currently 0.031. You have a long road ahead of you. Make sure you have an oncologist you can talk to and who offers wise advice. Good luck!
Amen on the intermittent adt TA …. Just my opinion but if you have your foot on its neck and under control …. It’s a mistake to let that adversary up to have another free go at you. It’s gonna prevail eventually anyway but it makes sense to me to keep it down as long as possible and just man up to those side effects. Just my perspective others will vary.
Hello, I just realized I did not answer your question. My advice is to not alter your every three month injection nor to get off it. Your PCa horses are out of the barn. What many men don’t seem to understand is PCa cells are heterogenous not homogenous. Much more difficult to treat once they escape the prostate. There are white horses, black horses, brown horses, mares, stallions and everything in between. You need every bit of help you can get. Zoladex blocks the production of testosterone and PCa feeds on testosterone. I mentioned earlier you are on the ADT train for life. Why mess with the train schedule?
I’d guess this topic is subjective with a lot of variables …but ….
When I was DXed my psa was 1400-1600 . My GP told me that patients with high initial psa are often the ones that respond best and last the longest.
I was DXed very late and my first offer of treatment was inpatient hospice, I was a literal mess. Still I wanted to “ try “ something and not give up without even trying.
I went on Lupron Xtandi Zometa first out and my psa dropped to <0.1 very rapidly and has stayed there for 33 months , so far. Adt has crippled me and turned my life upside down but I’m still here , at least, and feel like I am going last lots longer, if however uncomfortable ( adt trashed ) and mobility impaired I may be.
There are some other guys here that have the same personal “ higher psa lasts longer “ ( less aggressive cancer species ??? ) …. So “ yea “ there is some anecdotal evidence that what your GP told you is true for some brothers here, including myself.
In your post was this: " since we know that ADT holidays do not seem to negatively affect the progression. "Tall Allen and Kaliber politely informed you of the error in that statement.
I have to say I was going to immediately reply with the following rude, blunt question:
Where in the hell did you get that idea ?
Anyway I wish the best for you. Try to enjoy these days despite having contracted the SOB we all suffer from here.
By the way I sincerely appreciate your post. I'm in the same boat as far as high PSA at DX. I have sometimes latched onto that indication even though I know it is anecdotal here on our site that a good response in bringing down a high PSA has good outcomes as again although anecdotal it sometimes helps me add a positive to the negatives that can enter my thoughts.Maybe someday we'll have some science based research to prove/disprove it.
By the way I sincerely appreciate your post. I'm in the same boat as far as high PSA at DX. I have sometimes latched onto that indication even though I know it is anecdotal here on our site that a good response in bringing down a high PSA has good outcomes as again although anecdotal it sometimes helps me add a positive to the negatives that can enter my thoughts.Maybe someday we'll have some science based research to prove/disprove it.
Thanks Campsoups. There was a study which purported to show that intermittant ADT was "not inferior" to continuous ADT - I dont have the reference here but it has been mentioned before by TallAllen among others . My line of thought is if a treatment whacks the PCA so hard as to rapidly reduce PSA to undetectable - then maybe just to keep the remaining PCa in check may require a gentler approach which allows some relief from the side effects of ADT. And then there is lifestyle and eating habits change. If you are living exactly the same now as in the years before the PC advanced then it is likely to advance if you stop treatment. But what if lifestyle changes - and more specifically eating habit changes give your body a bio environment which is not conducive to cancer growth?? - We "lifers" will never know unless we do some intermittant ADT. As always this is unknown because it is extraordinary difficult to make a full phase 2 clinical trial on anything concerning eating habits. Those on this site that take a bunch of supplements are hoping for the same - but we all have different cancers.
So I think - do I want to experiment on myself - then this becomes a well constrained test. Hence the idea that one could take ADT every 6 months just to keep things ticking over once nadir has been reached. There does not seem to be enough knowledge yet on precisely how PCa becomes castrate resistant - or how to delay this process.
I don’t usually disagree with TA but I disagree that we know intermittent ADT is unsafe. I haven’t seen any evidence to that effect. The data are unclear. If it was known to be unsafe, doctors wouldn’t agree to it. I’ve been on IADT for 8 years. Mind you my psa at diagnosis was 20, not 1000, and my nadir was 0.01, so out situations are not really comparable
My PSA at initial diagnosis was 11,201.69 and I had extensive lymph node mets and some distant bone mets. Surgery was not an option. Radiation was not an option. I went straight to ADT (two weeks of oral bicalutamide followed by injection of Lupron) and chemotherapy (Taxotere). That dropped my PSA down to a nadir of 1.56, but then it started to slowly rise. Seven months later it was at 3.0 and I added another layer of ADT (oral Zytiga + prednisone) and did another set of chemo (Jevtana). That has brought my PSA down to 0.05 for the last three months. My bone mets are stable in size and number, my lymph node mets are considerably reduced. I'm not planning to ease up on the treatments whatsoever. I just hope it is a long time before another layer has to be added.
First nadir was eleven weeks after the last session of the 1st set of chemo.. Current nadir was reached eight weeks after the last session of the 2nd chemo set.
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