getting back to normal after ADT

@rbtsch1951 {correction: "WHILE THERE IS light at the end of the tunnel"}

@jeffmarc Jeff, I am grateful for you. You're a real veteran of the disease and treatment and are very willing to share your experience. I'm glad to see you here and with AnCan. God bless your ongoing health!

To answer your question about having a hard time getting back to normal, the answer is YES. I, too, share many of your side effects. After 10 months on Abiraterone , 9 months Elligard and 1 month Orgovyx, I was having so many heart events that my doc stopped the treatment and is having me see a cardiologist prior to the next step. My PC is aggressive. Gleason scores 9 throughout. Positive lymph nodes on PSMA PET. In the three weeks I've been off all ADT, my sleep has improved 100%. No more heart events (waking up throughout the night feeling like my heart has stopped.... death dreams with significant clarity... out of breath walking up stairs...etc...). In the three weeks I've been off all ADT, my mental health has improved significantly. The heart issues and mental health have been my biggest concerns. I think we can all appreciate the hot flashes, insomnia, exhaustion and sadness in our change of circumstances, but for me the pervasive heart issues and overbearing depression suggested I needed further intervention. I hope that you're on the best path for you. I'm sorry you're enduring this struggle.

@jeffmarc Do men on Orgovyx versus Lupron recover faster in general? That is what I have heard.

@corin
Abiraterone It’s very hard on the heart. It gave me high blood pressure, Five afib Events and many hot flashes.

It is not appropriate at all for somebody with heart issues. I had not had an afib event for 15 years before starting Abbie. I’m getting an echocardiogram tomorrow and I know the reason I have to do it is because I was on that drug for 2 1/2 years.

Nubeqa Works really well all by itself most people. I know a lot of guys in their late 70s and 80s that are on Nubeqa Alone and they are doing quite well. It’s suppresses testosterone’s ability to work with the prostate cancer.

Jeff, Thanks. A conversation that I will have sooner than later with my guy.

I certainly hope that you can return to normal. My experience says otherwise. Im a 3yr survivor and received 3 shots before radiation, 2 eligard 1 Firmagon. To date Ive had or have some side effects from them. Bone loss, shrinkage, AFib among others. However Im still here and my psa is staying low .17 last check. The biggest side effect is my testosterone, after being taken low, it remains low, 217 last count and noticeable. I certainly wish you, and everyone all the best.

@ambika
Here is the answer from the study. Orgovyx recovery is much faster.

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

@lacraig1

Lupron does not cause the side effects directly but because it causes chemical castration of the tentacles, testosterone drops typically to single digit. Low testosterone actually causes the side effects. If you are older like me, 84, you may never recover from Lupron caused low testosterone (mine was 111 at 15-months after my last Lupron shot (4 months total). My urologist put me on TRT to raise my testosterone six weeks ago. Most of my side effects vanished within a week of Testosterone Replacement Treatment. In 6 more weeks, my blood will be tested for PSA and testosterone levels. My TRT will then be adjusted to get me to a normal testosterone level.

Numerous studies have shown that TRT is OK after radiation and ADT treatment because testosterone does not cause or feed cancer as once believed. I have not had a chance to discuss this with my doctor, but it now makes me wonder why ADTs are prescribed, now that we know that normal levels of testosterone do not increase the risks of cancer.

I had just one 22.5mg and had terrible side effects,tumor flare being the worst and now 13 months later the hot flashes, fatigue, shortness of breath and now my joints are very painful I've found that Lupron can cause issues with tendons or ligaments losing elasticity, it is known to exacerbate heart conditions, swelling in my legs, difficulty sleeping so many really can't even name them all and feel like a complaining but I was never like this. Try not to think you're imagining these things if they're bothering you they are probably real, I've been seeing counselor because I was second guessing myself. My thought are with you and you are not alone in the struggle we try not to point fingers but many things are lies by omission. I hope you can find help and some peace.