Testosterone Recovery after stopping orgovyx
Seven weeks after stopping after being on Orgovyx for 12 months, my psa is 0.02. My Testosterone bounced to 45 from 8. My Testosterone was 324 before Hormone therapy.
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It is the same health care system so I figured I would get the run around. All I did was ask him to read some articles to let me know what he thought. I am searching for a new doctor outside that system.
My experience, albeit not sure what the question is...
I did 12 months of Orgovyx, April 2023-April 2024. We measured PSA every three months since and T twice, at three - 328 and six months - 445, start point at treatment was 608. I have my upcoming Medicare annual wellness exam where my PCP does labs and he's included T
So at seven weeks, 45 may not be at the same rate mine was.
I am not sure why I recover so "well" after ADT. One theory I've seen literature on is the role of exercise in T recovery, I go to the gym most days, other days I ride my bike. I take care of all the yard work, active vacations where we hike a lot...so, maybe?
Perhaps the other question is TRT. The old adage is T is fuel for the fire...I am not sure of that. When I came off triplet therapy in May of 2017 with my last 90-day Lupron shot, my T recovered in a similar pattern. It was four plus years before my PCa started acting up. After 12 months of Orgovyx, my PCa lays quiet.
So, if T is the fuel, my PCa should have reared its ugly head long before it did after triplet therapy and even now, it should have. My medical team has no explanation, nor I have I found any in my literature searches. They and I just say, be happy, I am. There is a noticeable difference though as I say, the only noticeable difference between what I do on, and off ADT is how I feel doing it.
So, if your medical team does not want to discuss TRT, find others. I have fired two urologists and an oncologist over these 11+ years for their inability to actively listen, be open to other ideas and share in decision making.
Kevin
My Orgovyx experience was a bit different. My T was 600 before starting. Three months after stopping it returned to ~360 but then after six months it dropped into the 200s and now below normal. This was very discouraging but my doctor said it can bounce around for awhile so we'll see.
I would ask your doctor to do a full testosterone panel: testosterone, free testosterone, estradiol, FSH, SHGB, etc. This will give a better picture of how you're recovering.
Realistically, you won’t get drs to read anything you send them. They are totally overwhelmed with patient load, administration and ‘paperwork’ although today it’s done on a laptop.
Even if you sent them research articles from NIH and major cancer institutes, they would look at the title and that’s it.
Treatment for this disease is perilous - everything comes at a cost. When the dr or Np read me my rights about all the possible side effects of this or that I didn’t even listen….why bother? I read all about it already and I was focused on the cancer, all else be damned.
So whatever the ADT did to me, or whatever the radiation does to me down the line I am not gonna look for the ‘whys’ - I KNOW why. If there’s something I can do about it, I will and if not, it will suck to high heaven and I’ll just have to deal with it the best I can.
Radiation kills… So it can also bring on things less fatal - neuropathy, incontinence, secondary cancers, etc. After treatment, anything goes and you are pretty much on your own, since like a cracked egg, the damage really cannot be undone. Not fun to hear, but there it is. Best,
Phil
Testosterone recovery is unevenly distributed among us.
2 recent patient directed webinars on PCF.org discuss hormone therapy and mention recovery of T.
Very generally, the longer you are on ADT, the longer to recovery; between equal to or double the treatment time is a very rough summary.
And age is a factor. And it is very individual. And some men never recover T.
At 73, I had 4 mos of Orgovyx with a baseline of 439.
5 mos after ADT , my T was in the 200s; 9 - 15 mos my T was in the low to mid 300s. At age 75, 18 & 21 mos following tx, my T has surprised me by rising to the low - mid 400s.
Just 1 Layman's experience. And no, I have no explanation.
Best wishes.