getting back to normal after ADT

@jeffmarc falling asleep is easy it's the constant waking up that's troubling.

Often when I wake up, some of my body parts are all wired up, and I know I'm not going to fall asleep any time soon. So I go work on the computer or watch Netflix

@lacraig1 Have you seen a radiation oncologist or an Urologist for a first or second opinion? Have you had a PSMAPET/CT Scan? Since being on Lupron I now also take Rosuvastatin tablets.

The problem with Zytiga is that it's a first-gen ARSI that requires taking a steroid with it, and steroids themselves can cause or exacerbate side-effects for many people.

The second-gen ARSIs ("lutamides") do not require a steroid, have fewer side-effects for many people, and are somewhat more effective, but they're also *very* expensive (especially in the U.S.), so insurers probably try to steer doctors away from them.

@jeffmarc My first blood work six weeks post treatment (18 months Orgovyx) showed PSA still <.01 but testosterone has risen from <10 to 48. Regretfully, I don't have pre-treatment testosterone number. I still have plenty of hot flashes but am starting to feel a bit more "normal."

Well...

Factors affecting testosterone recovery generally:

Baseline T
Age
Length of time on Systemic Therapy
Which Agents, Lupron vs Orgovyx...
Health issues such as -
Body Weight: Carrying extra body fat, especially around the abdomen, lowers testosterone because fat tissue converts testosterone into estrogen (according to Harvard Health Publishing)
Sleep Quality: Not getting enough deep sleep disrupts the body's natural 24-hour hormone production cycle
Stress: High or long-lasting stress releases cortisol, a hormone that suppresses the brain signals telling your body to make testosterone
Health Conditions: Diabetes, obesity, and specific injuries or infections of the testes can cause levels to drop

Some you control, others you don't.

There are statistics which show T recovery, it can take awhile, 12 -24 months, longer, or not...

There still exists the antiquated (my word) notion that those who come off treatment, T, any T, is "bad." My experience, 18 months of Lupron and 12 months of Orgovyx, T recovered to 100+ in the first three months, 400+ around six months. My first treatment vacation lasted just under five years, we're at 27 months this break, next labs in October, PSA has held stead yat .02-.04.

So, talk with a Endocrinologist, Urologist: since low testosterone persists and significantly impacts quality of life or cardiovascular health, discuss management options,

As others have indicated not all in the medical field are on board with TRT so you may have to consult more than one...

If you do TRT, it goes without saying, continue to monitor your PSA. It may rise at some point, you'll want to know that and in concert with your medical team and the clinical data, discuss treatment choices.

Kevin

@northoftheborder thank you

that's good to know. I am seeing things in this discussion to the effect that this is all unnecessary now

My T bounced to 230 two months after adt and radiation. 16 months late it is down to 175 and generally feel lousy with brain fog and low energy. PSA undetectable. Frankly, I don't feel much different than when I was on ADT. I don't weight train but on the mountain bike trails for a full body workout 3-4 times a week and have to force myself to get out there.

I am on month 9 of a planned 12 months Orgovyx (preceded by a 3-mos Lupron injection ) following SBRT got Gleason 4+5 disease (PSMA disease confined to prostate except for one equivocal external lead node thought to be benign, but included in the radiation port). My PSA is down to 0.04ng/ml as of early July and Orgovyx will be completed in early December per my radiation oncologist. The ADT side effects (especially musculoskeletal pain and mood changes) are worsening as the duration of treatment continues. I exercise 5 days a week including Zumba, Pilates and Yoga. Either light at the end of the tunnel I am growing increasingly apprehensive that my testosterone recovery will be slow in spite of the “promise” of quicker recovery with Orgovyx than Lupron. Nevertheless, I am determined to stay the course for the promise of probably cure. No one ever promised a rose garden but knowing that doesn’t make me feel much happier.

The sexual side effects have taken a total on our marriage, understandably as well. I will persevere …

Will life ever be normal again !?!?

@jime51
Sounds like a good start. Because you were on it 18 months, it might take a little longer to come back, but the below study was almost a year and half the people got it back to a minimum required level in 86 days. Give it a little more time and you’re going to feel a lot better?.

In the HERO study, relugolix demonstrated sustained testosterone suppression superior to that of leuprolide acetate (97% vs 89%; difference 7.9% [95% confidence interval, 4.1–12%; p < 0.001]).

Men (N = 934) were randomized (2:1) to receive relugolix 120 mg orally daily or leuprolide acetate injections every 12 wk for 48 wk.

Overall, 74 of the 137 men in the relugolix cohort recovered to testosterone >280 ng/dl, with a median time to recovery of 86.0 d (95% CI, 65.0–92.0), versus two of the 47 men in the leuprolide cohort, with a median time to recovery of 112.0 d
https://www.sciencedirect.com/science/article/pii/S2588931123002900

@chippydoo
I’ve been hearing about this drop in testosterone levels a few times recently. If it doesn’t come back in the next couple of months, you should definitely consider testosterone replacement therapy (TRT). It seems to work a lot better than people used to think, Less chance of having a PSA starting to rise.