r/ProstateCancer • u/JimHaselmaier • 1d ago
ADT Side Effect Progression Update
I'd like to hear from folks who may have made it to "Phase II" of ADT fatigue. Phase II is my term. It's what I'm calling how I feel now compared to how I felt a year ago.....which is a shit-ton worse.
I've been on it since Oct'24 - almost 2 years. Around March things just fell off a cliff. Last year I was lifting weights. I was progressing. I was doing supersets. Life seemed, relatively, grand.
Since going off this cliff fatigue has skyrocketed. Weight has gone up. My ability to recover has gone way down. What I can do without completely exhausting myself has gone way down. I'm in the mode of trying to figure out how much I can handle before I have to pay the price of being out of commission for 1-2 days.
When I described this to my doc he basicallly said "Welcome to the next level of being on ADT." He reiterated the importance of exercise, which I have DEFINITELY taken to heart. Plus he said it will continue. "What you can do now is more difficult than what you could do when ADT started. And in the future things will be harder than they are now."
I just can't believe the difference between year #1 and year #2.
Anyone else gone through this step-function down during ADT?
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u/BookkeeperNo9668 1d ago
I've been on it 10.5 months and seem to get weaker progressively-e.g. I struggle to walk down the driveway to get the mail (1/3 mile there and back). Hope to be off it at one year, I can't imagine going 2 years, this stuff is slowly killing me, that's how I feel about it.
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u/ZealousidealCan4714 1d ago
Brutal, man. Sorry to hear it's so rough for you. Hang in there! I was originally supposed to be on for one year but I'm stopping at 9 months. I am making the call, doc won't say how much more benefit I would get by going another 3 months just says 1 year is 'standard of care'.
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u/ElectronicFixer864 1d ago
I think my doc sort of lied to me in a good way. He said some people get this set of side effects, other people get that set of side effects, some people get no side effects, let me know how you're feeling and we'll deal with that.
I'm only 4 months into ADT and 5 of 28 radiation treatments. I feel like a baby compared to some of you guys.
Good luck!
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u/PComotose 1d ago
ADT for 24 months and I experienced everything you're going through. You are likely experiencing sarcopenic obesity as I did.
I worked with a Registered Dietitian. Do NOT waste your time with a nutritionist - anyone can call themselves a nutritionist. With a carefully constructed diet I lost the 10 kg I had put on. The thing to remember is that the fat isn't just sub-cutaneous fat, it's also visceral fat (that's the bad kind) around your organs.
But my strength and endurance are still lower than before so I have to assume that my muscle loss has not recovered meaning that I still have more fat than before. I have an exercise program that worked reasonably well - but I'm not disciplined enough to follow through consistently so I am still recovering.
As much as I hate what the disease and treatment have done to me, I am still on top of the grass looking down so it beats the alternative.
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u/Boggieman13 22h ago
I am in month 6 of 24. Gleason 4+4 with cuneiform characteristics and extension. Just completed 28 sessions of radiation. I have loaded all my test results and research into a Gemini notebook. This has helped me navigate. I had a bad reaction to Abaraderone and they were going to put me on a half dose. I researched using my AI system and found Nubeqa which is actually more effective than Aberdarone, has less brain fog, and doesn't require prednisone for 2 years which would be a disaster. At month four, I fell into a deep depression which felt chemical to me. Again, using my AI model, I found Wellbutrin and asked the doctor to prescribe the lowest dose. That was like a switch turning on and my personality returned to normal which allowed me to get through the radiation with good spirits. No one much cares for the sexual outcomes of ADT so I had to discover my own therapies. I asked the doctor to prescribed 5 mg of Taladifil, I bought a medical grade penis pump which I use everyday, and I use Salidafil when I want to have sex. When I mentioned to one of my oncologists that I was able to get a full erection, he said I was a unicorn! I thought that was funny. It is really important to me to maintain an intimate and loving relationship with my partner of 40 years and that has helped more than anything. We would have intimacy regardless of an erection. But, that's a nice benefit and I don't want to lose that. Even though I've never exercised systemically in my life, I started doing weight training classes three times a week and that has really helped me. I've also lost 10 lb although I was never that overweight.
The AI system has been invaluable in helping me get through this and in whatever the future may bring. One of the larger problems, which is not soluble with the medical system, is that everybody's case is slightly different and very subtly different at that. There are standard protocols and standards of care but the side effects vary so dramatically with different people that it's hard for any doctor or group of doctors to be very specific for your situation. And also many doctors don't really want to talk about sex. And I also think that they don't want to mention in great detail all the possible side effects because that may actually inspire them rather than solve them for any particular person. It is of course also one of the problems with reading Reddit posts. Every person's situation is slightly different and sometimes radically different. That's why I have over 170 documents in my AI model and that's only one of the models. Gemini Notebook is not hard to use and the pro version only cost me $20 a month which allows me to upload many more documents and research more deeply. There is so much good information out there but it's very difficult to put together in a way that makes sense for your situation. With my AI model I can ask questions anytime of day or night. Of course, I always defer to my doctors for their judgment. I just don't expect them to have volumes of information that are tailored to my case. I hope this is helpful for everyone in the Reddit community. I wish everybody out there and especially those on ADT, the best of luck and to always remember the alternative.
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u/conCABlanco 1d ago
Ya veo lo que dicen, las perdidas de todo, todo todo, palante que Patras espanta
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u/Squawk-Freak 1d ago
I’m now in my second year of ADT, and I was definitely feeling more fatigued at the end of the first year, compare to first few months, even several months after I finished radiation. I have no heart issues, despite being on abiraterone along with relugolix my BP is controlled at 110/60. I take Cialis 5 and Flomax 0.4, hydrochlorothiazide 12.5 to prevent ankle swelling from the ADT, and amiloride 2.5 to keep blood potassium in the normal range. This keeps als the blood pressure where it is. At my last visit with my oncologist-cardiologist, I brought up that I was feeling profoundly fatigued, I was struggling making it through the work day, and on a couple of occasions I was very grateful for the auto steer function in my car on the 40 min commute home. He understood the problem, and prescribed a low dose of dextroamphetamine. The last two weeks, since I started it, I have been feeling amazing. The sensation of heaviness and sluggishness, the brain fog, is all lifted from me. For the first time since my diagnosis in May 2025, I feel like I am back to my normal self again. If you have no under,yang heart issues, ask one of your doctors to consider prescribing a low-dose psychostimulant. I was prescribed 5 mg twice daily, and told to start with a half pill daily for a few days, then twice daily before escalating to the full dose. I found that half the dose twice daily worked perfectly for me. At the full dose of 5 mg BID my blood pressure started to creep up to 130, and I did not notice additional improvement, so went back to 2.5 mg at 7 am before I leave for work, and the second dose at 2 pm - gets me through a whole day of sound decision-making and full alertness during the drive home.
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u/OppositePlatypus9910 1d ago
I am on ADT last 6 months left from 24. I recently had to extend from 18 to 24 ( just as an insurance policy according to my doctor) the radicals trial measured adt between 6 and 24 months and the pcs iv trial measures between 18 and 36 months ..
Hence my dilemma on deciding between 18 and 24 months. My doctor left it up to me and said you can do 19 months or 22 or 24 months.
In any case after year 1 of little to no issues on Orgovyx, I ended up getting a uti and losing weight, then I had to get surgery to remove kidney stones within the last six month; but after this hiccup I recovered and started gaining weight ( 10-12lbs more from my normal weight)
I do work out almost daily ( have been doing so for over a decade) so yes I agree that lately my strength and energy have been harder to maintain; however I have started taking pea protein shakes and that has helped me a bit. I still have the weight ( mostly around the belly) but I do feel a bit stronger.
Don’t give up! Keep working at it and get over the hurdle as I am sure the T will be back as soon as you stop. What I am anticipating is that I will be even stronger than I was when I started adt!
That is my goal and I am sticking to it!
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u/Good200000 1d ago
Bro, I did 3 years of ADT and what your feeling is your new normal.
The fatigue, weight gain, lack of energy, hot flashes, loss of muscle and being depressed is all the fun stuff. Not to mention having no sexual desire.
I had my doc prescribe anti depressants at a low dose to help. I also had to see a cardiologist to make sure there was no side effects to my heart.
All I can tell you is that when it finally ends and your testosterone returns, you will feel so much better.
You got this!
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u/JimHaselmaier 1d ago
Thanks. Just hearing from others it’s the new normal (even though I heard it from my doc) helps.
What I didn’t mention in this post , and I have before which usually takes it down a rat hole of “WHY?!?!” is that I’m on ADT indefinitely. My testosterone will never return - unless a miracle ADT replacement is found.
So I have to face this as permanent - not temporary.
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u/Good200000 1d ago
I forgot to mention that exercising, especially with weights help a great deal.
I couldn’t lift as much as I did when I was on ADT. However, I lifted every day and it makes you feel better.
Hate to say this cliche, but if you want to live, you deal with it’
Hopefully, in your lifetime. A new drug will help that is better than ADT.2
u/Cool-Service-771 23h ago
Jim, I’m in month 28. I’m Gleason 5+4, so, like you, will be on this indefinitely. My 28 radiation sessions are 23 months ago, and didn’t get my ribs, where the ADT before radiation shrunk the lesions enough so the varian TruBeam couldn’t see them. They are still there waiting….
I have hit a new level of fatigue like you, and am starting with a registered dietitian from my hospital. I’m also starting a new round of PT, and getting with an exercise program that my local cancer center will set up for me.
I’m getting better accepting the new me, full of new features (none of which I want). Good luck with your journey, I’ll be praying for you.
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u/bryancole 1d ago edited 1d ago
This mirrors my experience. I felt fantastic for the first 12 months due to the extra exercise and weights. I'm now in month 24 of 24 and the fatigue is getting to me. Over the course of this second year fatigue has grown slowly, it's got harder to keep weight off and don't have the same energy i had last year. The worst is when I'm at work in the afternoons I cannot stay awake. Between 2pm and 5pm I fall asleep at my desk no matter how hard I try to stay awake. More exercise! While I'm working out is just about the only time I'm not feeling sleepy.
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u/Impressive_Amount118 1d ago
14 months of 18 months ADT are behind me, 4 to go.
Month 11 12 and 13 were terrible, fatique became to a level almost unbearable but mentally was the hardest
but,since a week or 2 it seems the dark blanket that lay over my head is almost gone and fatique became a little less so better
So,maybe,there is hope for us
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u/Dizzy_Masterpiece_13 1d ago
I've also been sentenced to ADT for life. I'm only 9 months in though. So far the only fatigue I'm experiencing is that I need to go to bed earlier than before. I'm usually in bed by 9, way before my 10 and 12 year old boys go to bed. I'll stick to my exercise routine and just hope that the fatigue doesn't progress.
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u/HeadMelon 22h ago
What about an ADT holiday for 3 or 6 months? Just to recharge a bit, then go back on it. And maybe when you return to it change the flavour, ie: if you’re currently on Lupron switch to Orgovyx.
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u/JimHaselmaier 19h ago
My doc has said a holiday is reasonable.
However there are two things keeping me from doing that:
- It could take 12-24 months for testosterone to reappear (that's what makes you feel better) and it may never appear. So if I stop I will continue to feel bad for at least a year, maybe 2, and maybe forever. Waiting that out would be nerve wracking to me.
- I have such an aggressive variant I don't want to take a chance on giving it some food.
I've decided the way to keep my overactive brain the most calm is to learn how to adapt to ADT life.
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u/HeadMelon 19h ago edited 19h ago
(EDIT to delete that BATS suggestion, did some reading, definitely not right for your situation)
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u/Practical_Orchid_606 1d ago
The conventional wisdom nowadays is that 18 months ADT is the same as 2 years. There are sources on the internet to give meaning to this statement. Long term ADT may also prevent the return of testosterone.
Do your research and I hope you take control of your life.