Fun with ADT and testosterone
I know I’ve mentioned to people on here that I quit taking Orgovyx. I was on Lupron for seven years and then took Orgovyx for 8 months. I did this after discussing it with my oncologist. After all this time on ADT, it was unlikely that my testosterone was going to come back quickly if at all. She agreed but also added the sensitive testosterone test to my monthly tests.
It’s always been believed that it takes as long to get your testosterone back as you were on Lupron. Not sure that really is accurate..
First month i was undetectable second month testosterone hit five, third and fourth months it went up 80% each month. Last 2 months over 20% each month and it hit 49 on month 8. This is a lot faster than we were expecting it to come back. We know that PSA comes back much quicker when you’re on Orgovyx. Did that last eight months make that big difference and offset 7 years of Lupron.
I know other people in here have reported that their testicles had shrunk a lot on ADT, but I never noticed that. I wonder if that is a factor.
I emailed my oncologist about this, as we had been discussing the number in previous months. She responded to me that based on the Embark trial I really should not let it get above 50, so I’m back on Orgovyx. She has a huge client base, she’s the only GU oncologist in the whole Kaiser system and she’s in northern California. Within 42 minutes of sending the email to her about whether or not I should go back on Orgovyx she had communicated back with me twice and put in a prescription for orgovyx. People complain about non-responsive doctors, she is available almost all the time and extremely knowledgeable.
You never know how long it will take to get your testosterone back! SURPRISE!!!
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
All I can say is : let’s compare our T levels in July , when mine is checked again. Been off all ADT meds since January 22, 2025. Was on ADT for 28 months total.
I started on Orgovyx today. It will probably be under 5 in my July test. I can post it.
Good luck on getting it back quick.
I do t know if Orgovyx slows Testosterone s return. Sorry.
Seven years is a long time on ADT. I would think that the guidelines for testosterone return get somewhat fuzzy after so long.
I’ve read that older age can impact the rebound of testosterone as well. I’ve read that with age, the testosterone sometimes might never rebounds. So, age + time on ADT is not always a good combination.
I was on Eligard for six months (two 3-month injections in April and July 2021) along with my 28 proton radiation treatments (19 April-28 May 2021). My testosterone level dropped as low as 3.0 ng/dL, and remained in the high-single/low-double digits the entire time the Eligard was in my system. (My PSA dropped to 0.008 ng/mL.) It took 4 months after the end of that second 3-month injection for my testosterone levels to return to normal. That’s a little more than the +50% time that I read about, but it was close enough……
I experienced no testicular issues, but had significant muscle atrophy and loss of strength.
In January 2022, I recall telling my wife that I thought the Eligard was wearing off because I was beginning to lift heavier weights at the gym. Since I wasn’t due for another “official” bloodwork for another couple of months, I self-ordered another PSA & testosterone test (out of curiosity), and those came back as 0.13 ng/mL & 403.0 ng/dL, respectively - meaning that everything was going exactly as expected (that is, PSA was staying low and testosterone was on its way up). The muscle mass, and strength all slowly returned.
Testosterone levels have long been back to normal and PSA varies between 0.35-0.55. Most recent PSA was 0.476.
If one has surgery, PSA should stay close to undetectable. If someone has radiation then a PSA of .476 is fine, after so many years on AS waiting for further treatment being needed, you are doing great.
I am 77, time on testosterone and age seem to not be the only reason testosterone comes back. Maybe Orgovyx ends that “rule”
Yes, I was on active surveillance for about 9 years, before choosing radiation treatment. During treatment, my PSA was close to undetectable while on ADT in 2021; over those months my PSA was 0.008, < 0.008, and 0.008. Now, four years after treatment (I’ll be 70y in a week), my PSA remains stable - I just had my 4-month PSA test this morning; it was 0.473 ng/mL. So, we’re now moving to every 6-month PSA tests.
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As for testosterone (T) recovery after ADT —> Since you were on Lupron for 7 years (and at 77y), it will likely take more time for T levels to recover - longer than just the 8 months you’ve been on Orgovyx.
In the HERO study (https://www.sciencedirect.com/science/article/pii/S2588931123002900) comparing Orgovyx to Lupron. in addition to other factors affecting T recovery, “….Men ≤65 yr and those with baseline testosterone greater than the median had a higher incident rate of testosterone recovery…..”
This 2024 study discusses it: https://pubmed.ncbi.nlm.nih.gov/38552845/
This 2008 study discusses it: https://pubmed.ncbi.nlm.nih.gov/18279929/
The full results of that HERO study comparing Orgovyx to Lupron should be of interest to anyone interested in comparing T recovery.
Those pubmed articles show 53% still at castrated Testosterone levels after 31 months. And they didn’t spend 8 years on ADT and I am 77.
At the rate I have been rising I would be Over 200 in less than 16 months.
My cancer is very aggressive, I went from PSA of .2 to 1 in 18 days when I tried to go from 4 Zytiga to 3, and I was also on Lupron. I can’t take a chance of having my testosterone rise So back on Orgovyx.
I think i saw that you were also on darolutamide. Will you be on darolutamide and Orgovyx now? Was thinking darolutamide would be enough to slow the psa but sounds like it is not. All the best with it, of course.
Thanks,
Phil
Yes, other studies have similar results. More than just a few years on ADT and being upward in years, sometimes makes those T recovery guidelines a bit more fuzzy.
Might be one of the reasons they’re moving doublet therapy (ADT+ARPI) up earlier into the treatment regimen.
Catching it early is key,
Darolutamide kept my PSA undetectable for the last 19 months, 8 of them alone.. I am on both Orgovyx and Darolutamide now. Probably because of my BRCA2 My cancer tends to come back if I reduce my main medication at all. I tried going with three Zytiga instead of four in 18 days. My PSA went from .2 to 1. Based on the Embark Trial, my oncologist didn’t feel that it would make sense for me to have my testosterone above 50. I don’t want to take a chance after 15 years and four reoccurrences. I’d rather stay on the medicine.