Hi,
I'm 75 years old. Gleason 4+3 SBRT in 2020. Good result for a time.
Metastasis to three lymph nodes in 2023.
Ogorvix plsu Aberatrone for six months, two series of EBRT.
PSA dropped to 0, so did T. But the side effects were intolerable. I don't seem to tolerate no T, even with 6 hours of weekly exercise. Feel 10 years older.
Took one year ADT vacation. Cancer came back 3.6 PSA, and three more lymph nodes.
Does anyone have experience with enzalutamide as a mono therapy?
Hate to write this but they all drive down T. Low T is what causes the side effects.
I see you exercise 6 hours a week but you did not mention what you really do. You need to expand the resistance training. That is really the only thing that really overcomes the T in addition to HIIT. Not just walking.
I will be 80 next month so yes I understand but it is necessary.
Enzalutamide was very bad for me. Fatigue and felt like crap. ADT was horrible but nothing like Enza. I've tried Zytiga, enza, and daro. My choice is darolutamide.
11. A: Long-term Efficacy and Safety of Enzalutamide Monotherapy in Hormone-naïve Prostate Cancer – ScienceDirect sciencedirect.com/science/a...
Darolutamide monotherapy has also been studied. Zytiga also.
Hi Allan188,
I did two years on lupron and zytiga and found it to be too much for me, it almost broke me.
Got one year vacation, then PSA at 7-ich so started enzalutamide monotherapy. Did six months and the side effects were manageable and got PSA down to 0,17 but still decided to switch to darolutamide monotherapy hoping for even less side effects.
Dont know the results as of now (soon up for 3-month checkup), but the side effects have been very low for me so far.
Now, I wouldn’t advice anyone else doing this, since as far as I know the chances of a long life is less compared to ADT + enzalutamide/darolutamide, but for me - for various reasons - it’s still worth it.
In the UK doctors are not allowed to prescribe enzalutamide as a monotherapy, but only as an adjunct to ADT, since there is clear evidence that it is less efficacious when taken by itself.
The real problem though is that it more fatiguing and far more toxic than ADT is.
It is, however, a very powerful drug and people have had great anti-tumour results taking it. In my own case my psa tumbled quickly once I’d started it, so I’m a buyer.
I have posted previously on the dosage necessary - it appears that taking a half dose may be just as effective, but comes with significantly mitigated side-effects. I now take 2 of the 4 pills, and it works well.
I had a great response with one pill a day
That’s brilliant to hear!
Darolutamide(Nubeqa) would be better tha enzalutamide(Xtandi) for quality of life (side effects not so hard".).It is better with its low blood–brain barrier penetration and low risk of CNS-related adverse events.
I am similar as far as disease and treatments Have had Bracky HD though plus EBRT on prostate Followed with 4 bone mets treated with SBRT on those Am in remission but have intolerance to my drugs Am o Orgovyx and Xtandi but cant tolerate side effects of Xtandi Your problem might be The drugs as we all have fatigue more or less from testisterone deficiency but it keeps us alive Tired is better than death. I have decided to have my testicles removed as that is one less drug to ever take even though the Orgovyk works great and gives me minimal side effects. You decide on that one as it is permanent. Next I have stopped Xtandi as gives me headaches and brain fog. Must talk to my MO doctor for a replacement for Xtandi like Nubeqa or Bicalutamide to see how they affect me as everyone is different. Don t assume your loss of testosterone is the main culprit as it could be your drugs Best of luck
”Ogorvix plus Aberatrone” : why do you need both, didn’t Ogorivix by itself drive your T low enough?
Nubeqa as mono therapy worked fine. Kept it under 2.0. RO at UTSW got aggressive and zapped chest node while surgery removed hot one in pelvic area. PSA now 0.05
I have been on Xtandi monotherapy for 7.5 years. Spinal met 2 years ago despite at 0.3 psa. SBRT then. Enza does not lower T, it prevents metabolism of T ANYWHERE in the body. My T is 350-500. I have never had hot flashes on any ADT drug so cannot say what difference with Xtandi. If you believe the side effects of any treatment are less tolerable than the consequences of reducing the dosage then it is your call to discuss with your doctor.
My doctor said he continued to prescribe full dose for Xtandi during my lower dose periods (1, 2, or more per day) because wrestling with the pharmacy benefit manger was not worth it. I now have a 7 month stockpile of Xtandi due to my periods of lower dose.
I was on ADT for a couple of years after RP with a couple of lymph node mets. PSA started rising so the MO put me on Xtandi mono. PSA dropped and stayed low for about 18 mos, then started rising. New MO tested my T and it was 800+. Go figure. Back on ADT + Xtandi + Docetaxel for 6 cycles. PSA back down. T @ 15. Then the dreaded rise. Now on Zytiga + ADT. Tolerated most of this ok, although the chemo was harsh on days 2-4 after each infusion. Lost a bunch of strength and muscle. But I did notice favorable changes when on just mono Xtandi, which was likely the T increase. Been doing the something similar to the Robert Newton exercise protocol. Seems to help. I have always been a heavy exerciser.
I was on Lupron for about 10 years and now on 120 mg Xtandi after having testacies and other than gaining weight and not sleeping well I have has no real problems. If I would start back going to the gym it would be better. My regular doctor does not like low or no T but after talking to Urologist I still take it. Why gamble is my thought. I am 83 and have a PPI.
Any thought about SBRT on the spots showing in your scan to see if you might be able to delay the drugs?
I am taking Xtandi together with Zoladex injection. Zoladex is every 3 months. I take 2 tablets of Xtandi everyday. Used to take 4 tables everyday, but reduced to 2 tablets per day because of everlasting fatigue. Dr. Suggested Xtandi monotherapy, but I have refused the Monotherapy. The reason of my refusal is because I was so scared..... about the Monotherapy while T may become1200. Now, my T is 23. But I am still thinking about the Monotherapy. Some medical articles show that the Mono is far better, as you have option to use Zoladex later...... but I am still scared.. . I do t want to bet my life on some of medical dissertations.....???????
BAT question. A little worried about results. 
Xtandi causing pain?
Vacation is over - Cancer spread - two spots in the bone and new lymph nodes. Suggestions ?
PSA going in wrong direction
what exactly causes the decrease of PSA plus other questions for inquiring mind
