Anyone here after ADT undergone TRT

Hi Rotate - Your "stop TRT and no ADT" situation sounds a little like mine.

I had been on TRT for 13 years and stopped it immediately after prostate biopsy confirmed Gleason 4+3. Total testosterone (TT) dropped from 900 to 50 in the following five weeks. No ADT at all. PSA also dropped from 8.1 to 1.9 during this five-week period. Radiation oncologist was okay with me passing on ADT since I was "close enough" to 20 ng/dL TT castrate level.

Started my five session SBRT radiation. Six weeks later my TT was 60 and PSA was 0.1.

Just curious -- How low did your TT and PSA go after you stopped TRT?

I was in the same position after a pause in eligard. For over a year my T levels and PSA stayed at zero, but I felt like crap. I was also anemic . I had TRT after that, and my serum T levels hit 1000! So I gradually reduced my T injections to the smallest increment I could see on the syringe, .01 cc. And my T levels dropped to 70, my blood values stayed in range, and my PSA. Stayed 0. That lasted another year til my PSA began to rise.

It seems once eligard turns T production off, in me the natural T production never returned.

Hi, kenk1962 - My TT went from 480 to 117 then up to 129 or so, so not castrate level. PSA 8.6/7.8 to 3.2 So I get the side effects, a bit less intense, without as much ADT protection, and having a scary Gleason level (9)..

Starting PSA levels were 10 weeks pre-MRI,biopsy, two levels taken about a month apart. 117 and 3.2 were one month post ending TRT, not measured since.

I had eligard for a year with zeros for PSA and T levels we paused the eligard and for a year afterwards everything thing was still zeros and I was still anemic. After lots of discussion we started TRT but my testosterone levels were near 1000 at the start. Over a year I reduced the T amount I was taking until I was no more than 5% of what we started with. At this level my T blood levels were < 100 and still no PSA but good hemoglobin levels. My PSA began to wiggle a bit above zero, so we started ADT again. The whole time period of this was about 4 years. It was nice while it lasted. My T levels dropped back to zero, and I became anemic again and I got the pleasure of experiencing hot flashes once again. I’m now 10 years past initial diagnosis, and have just gone off eligard, but am continuing xtandi treatments of 2 pills per day. The xtandi started 2 years ago. I think there are better options than eligard, especially for long term use. There’s some debate between my urologist and I, but I think the eligard was a major factor in the decline of my kidney function, which I’m now battling along with everything else.

Thank you Rotate for the reply regarding total testosterone (TT) and PSA levels.

I agree with your trepidation to participate in a Gleason 9 clinical trial without using ADT. Gosh...Gleason 9 is a serious and scary classification. Gleason 9 treatment typically uses all available tools to fight the cancer. As much as I hate the awful side effects of ADT, I acknowledge ADT has been viewed as necessary to fight anything more aggressive than Gleason 3+4=7 cancer.

When you enrolled in your clinical trial, do you recall the reason(s) the trial's director or leader provided for why their team believed the "no ADT needed for Gleason 9" trial had a decent likelihood of success? For example:
- Does the trial use some sort of improved technology whereby ADT is thought to no longer be needed?
- Does the trial use something else (e.g., maybe repurposed drugs, maybe higher radiation doses, perhaps a different way to administer drugs or radiation) for which it believes enduring ADT is not needed?

I suspect there is an underlying reason to support the trial's "no ADT needed for Gleason 9" hypothesis. I'm not smart enough to speculate on what that might be, but I bet it can be found. Seems implausible for an institution or medical equipment vendor to invest their money in a trial without a reason to believe a better outcome can be achieved.

I'd recommend investigating/seeking the reason supporting the trial's purpose. Then I'd run the reason through some different A.I. programs. For what it's worth, I'm a fan of Perplexity.AI Pro (costs $20 for a monthly subscription) which I use frequently. At a minimum the A.I. programs will give you some independent feedback and references to the scientific articles used in the A.I.'s analysis.

You've had quite an experience during the last ten years.

Since you're been doing this for so long and have enjoyed testosterone in the past, I'm wondering whether you've given any consideration to trying the bi-polar androgen therapy (BAT) treatment?

Dr. Sam Denmeade, a John Hopkins medical oncologist, has been the BAT pioneer. I've watched several videos where he talks about the BAT method which also delivers a higher quality of life than most (perhaps all) other types of prostate cancer treatments. More importantly, Dr. Denmeade specifically asserts he's willing to consult with other patient's oncologists on how to administer BAT.

The trial used more complex decision making than normal - especially DECIPHER.

The rule for no ADT is for only one risk marker of:

Gleason, PSA, T category, DECIPHER score.

Also, some urologists have been doing less or no ADT.

The standard of care in the trial is normal, except for the ADT (for the low risk group), or less ADT for the intermediate risk. Not sure about the High Risk group because I don't know the non-trial standard of care.

And yes, it is scary. I did a lot of analysis (with the help of AIm BTW) before I decided that the added risk to me, given my age, comorbidies, etc was statistically pretty small given the risks I have anyway, plus the risks (and unpleasantness) of ADT itself. However, I'm getting most of the ADT symptoms anyway. Who knows about the risks.

Note that I have severe hypogonadism. The trial allows people with normal T, so they probably have even higher tisk.

Adding to my response... the purpose of the trial is to find out if and under what conditions ADT can safely be reduced or done away with, in high risk PC cases (i.e. Grade Group 5).

As for AI - I used Grok, plus looked at some of the clinical trials and other papers it found.

Good - you've researched, used the power of AI and the study's rationale is laudable.

For what it's worth, I like DECIPHER and was a bit disappointed when my Mayo radiation oncologist asserted she didn't think it was necessary for me and my Gleason 4+3=7 . I didn't challenge her on this because I had already come to the conclusion that near castrate level total testosterone (mine was 50 ng/dL) was likely advantageous. I had nine of 13 cores in my biopsy as being positive which made me extra reluctant to pass on androgen deprivation even before meeting with the radiation oncologist.

I also get how you have some degree of anxiety about enrolling in the clinical study. For what it's worth, I also decided to enroll in a clinical study for the treatment of my situation. Of course my study was different from yours. In particular, my study involved an experimental treatment arm that:
(1) narrowed the margin of he radiated prostate from the standard four millimeters to only a two millimeter margin,
(2) reduced the number of SBRT radiation sessions from five to two and
(3) used a new, MRI custom redesigned radiation field for each of the two treatment sessions.

Part of the reason I said "yes" to this study was because I had heard some encouraging similar "less radiation" comments from a New York University Langone study that I believe was started in 2024. As it turns out, however, I was randomized to the control group in the study and received the standard of care, normally applicable five SBRT session treatment.

Hey - I'll be cheering for favorable results in your study. Best wishes!

Would you mind sharing the name and NCT number of your clinical trial?

My clinical trial was the "Adaptive Radiation Therapy (ART) Stereotactic Ablative Body Radiotherapy (SABR) for Primary Localized Prostate Cancer" The trial number was NCT06325046. It was started in 2024 and I was the 51st person randomized to the trial which seeks approximately 150 participants.