Restarted ADT 3/15/23 with my Lupron shot followed quickly with Xtandi 160mg daily. My PSA peaked to 3.36 on 3/7/23 and then
4/3/23 1.65
5/1/23 .34
So hoping the trend continues downward. Not sure if a slow or quick drop is better on recurrence. My RO said, when asked, "lower is better". Its getting harder to see my MO these days and the last 2 visits were with a very pretty NP with grey, blue eyes (all I could see over the mask) That novelty wore off (thanks ADT) pretty quick so waiting 2 months until the next visit. But he will respond quickly on the portal if needed so the in hospital visits seem unnecessary to some degree. I am sticking with monthly PSA tests for now, T is at 16.
This time around I have all the side effects I had the first time around and all the ones I didn't. Either Xtandi is stronger than zytiga or it's because I am not exercising as much. With better weather I hope to change the latter. If it doesn't lighten up in another month and if my PSA drops low enough I may discuss lowering the dosage which I did with zytiga after I was taken off full does and then put back on at a slightly lower for the remaining of my 2 years. The brain fog is making busy days at work more difficult.
Anyway, my biking hasn't taken a hit as my average speed on my regular routes hasn't changed from last year. Still working the kinks out of my neck muscles from not riding as much this winter and constantly thinking about the mets in my neck the PSMA PET found. That's normal though so mostly everything is good for now.
My best to all that are that fight this beast as well as those that care for them.
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treedown
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Thank you for posting this. As you might know I am “ following “ you on this site but also in spirit as we have similar Dx. I too have been treated with “curative intent” and got my first test results recently having stopped treatment 6 months ago. The results were good but it’s what I expected at this early stage, in fact I will be severely pissed off if they are not good for at least another 1 1/2 years ie 2 years after stopping treatment. Then the PSA anxiety really kicks in.
I hope your PSA continues in a downward trend and you stick to your exercise routine as much as possible. At least you can take comfort from your loved ones around you… that’s important!
When / if the time comes I will update my bio, I’m not sure if I’m still in denial about my cancer that stops me putting it up.
Being off treatment brings back the feelings of normality I took for granted before diagnosis, and now value so much. It’s such a rollercoaster of emotions, this fucking disease. Take care
Wow so you went 6 months without a test after stopping ADT? Is your T back to normal? I knew months ago that I would be going back on ADT as once I hit 2.0+ nadir despite my MO saying we would get a scan when my PSA hit .5. Never happened. So here I am.
I hope yours stays where it is permanently. If you T hasn't come back yet that will be the real test. Best of luck.
I was Dx in 2020, Gl 7 (4+3) PSA 17 LN1M0. I had 39 fractions EBRT and 2 years Lupron, I was also on Casodex for a few weeks. My PSA remained undetectable and my Testosterone was 0.5 nmol/L - Australian units- throughout treatment .
My last LUPRON injection was June 2022, I had a PSA/T test 6 months later which was March 2023 and showed PSA <0.01 and Testosterone 8.8nmol/L Ref-Range 10.0 -35.0. So my T has increased but still below normal.My next Test is in 6 months time. I would be ok if my T remained at that level as I feel pretty good (anything is better than the feelings I had while on LUPRON) but I expect it will continue to increase to a normal level at some stage.
The only differences in our stats are, you had a higher PSA than I did at DX, but while your Gl 7 was (3+4) mine was Gl 7 (4+3). I understand the interpretation of the Gleason score system but I do not know if those differences are that important to our outcomes I don't think anyone does really. I read this site daily, but it seems" the more I learn the less I know " .
I know the feeling. What was your baseline T? Mine came back slightly above baseline in 3 months or less and my PSA held below .1 for maybe 6 months but trending upward for the most part from there. I thought I would feel full T but really didn't so I was surprised when the test showed it. Anyway had it stayed low I have no doubt my PSA would have as well and I would have pushed ADT off a bit longer. Not sure what initial Gleason means anymore going forward but with my high of a PSA all of my Drs believed, as did I, that I was M1 but they just couldn't find it with conventional imaging. They kept saying it wouldn't change the treatment if I paid for a Axumin scan out of pocket, which was the best scan at the time. My RO recently told me the Axumin scans weren't very good anyway. Everything is changing pretty fast and some of us will do well on the newer treatments so thats encouraging but no guarantee.
Your pretty much spot on. She is young and pretty and keeps playing with her hair. She is also a bicyclist so we had something other than cancer to talk about. Local rides and such. This time she had a trainy with her which was a equally handsome young man. Felt like a third wheel or a chaperone on a terrible date choice.
treedown wrote -- " ... I am a broken "old" man... "
As an elder cycling individual soon to be 73 --- I can truthfully make that statement --- but you still have some years to go 😊 before it's true and I'm sure you will make it. 👍👍 I remain envious of your rides and wife of 50 years next month said I should fly out and ride a ride with you before I ---
Why not continue to play with the *stuff* to keep the PCa mixed up. For myself, I'm back on liquid balls with monthly testing and hoping for better rides. Trying tomorrow for some drafting on my Giant Propel Advance SL from Ironman day's 10 years ago. STRAVA will tell. 😊
Thanks and a ride with you would be awesome.At first I read this thinking you said my wife of 50 and was going to correct you and say the 30 has felt like 50 at times :0)
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