Why is the experience of negative SE’s of ADT so variable…or are they?

Posted by handera @handera, 6 days ago

Those of us who remain “treatment neophytes” are all about risk-reward, with heavy emphasis on zero risk.

I’ve often wondered why some men seemingly breeze through ADT like it is/was a walk in the park and others indicate it’s like being continuously run over by a Mack truck minus the bruises, broken bones and internal hemorrhaging.

At first I thought it may have to do with one’s pre-ADT testosterone level and the magnitude and nearness to a perpendicular roller coaster drop to enter into the chemical castration abyss.

My research indicates that while pre-ADT testosterone levels, 700 ng/dL (my current level) vs. 350 ng/dL (for example) may subtly influence the initial intensity of side effects, it’s (apparently) not the primary driver.

While baseline testosterone level is certainly important, apparently one’s age, how long you’re on ADT, your health before starting chemical castration, diet and exercise choices during ADT, and how side effects are managed with the host of prescription drugs used to counter the slings and arrows of those inhabiting the abyss, that mainly determine how bad the side effects one will experience.

Any comments by those who climbed aboard the amusement park’s “Ride to the Abyss”?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I will admit a lot of info goes over my head. I have been on the ADT treatment for a little over two years. Since the beginning my testosterone level has stayed < 3. I have no idea what it was before starting the treatment. I get I'm 70 years old, had no idea I would feel this old so soon. I don't get to count them but I do believe there is more then one truck running me over. I don't understand, if the testosterone level doesn't increase, where is the energy level coming from for the gym rats on here. I recently retired, been doing yard projects, I do about 3-4 hours of work and I'm done for the day, and its not like I'm the energizer bunny when doing the work. I don't take naps during the day, and I am learning that if I take a day off and pretty much don't do anything, I feel better the next day. I am very tuned in that if I sit in that chair all day, I'm going to be in trouble so I try to keep moving forward. Hope I didn't go off the tracks here. Best to all.

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@handera

Excellent comment!

Read and watched your links….ramped up resistance training appears to be absolutely essential in minimizing ADT side effects and the key to your testimonial experience.

Interesting that the PCRI docs insist on compliance with this type of exercise routine CONTINUOUSLY through the entire time one is on ADT…or the “hit by a Mack truck” SE’s are all but inevitable.

It’s almost counter intuitive; since it’s well known that resistance training increases testosterone levels in men who workout simply to stay in shape.

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Yes, it is paradoxical for sure; I often asked myself during ADT tx. how weightlifting was helping me since it raises T…
But the Orgovyx does the job. Any SE’s I had were minor annoyances, but like@brianjarvis I was in beast mode the whole time, Rocky theme music in my head.
It worked, but honestly don’t know if I could do it again - it takes a mental toll after a while, almost like treading water in the middle of the ocean. You know you can’t stop ( no floating allowed on ADT!) if you want to live but after a while you start to ask yourself if it’s worth it.
That is why I have such admiration for those on this forum who’ve wrestled with this disease three and four times…simply extraordinary men.
Phil

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@stevecando54

I will admit a lot of info goes over my head. I have been on the ADT treatment for a little over two years. Since the beginning my testosterone level has stayed < 3. I have no idea what it was before starting the treatment. I get I'm 70 years old, had no idea I would feel this old so soon. I don't get to count them but I do believe there is more then one truck running me over. I don't understand, if the testosterone level doesn't increase, where is the energy level coming from for the gym rats on here. I recently retired, been doing yard projects, I do about 3-4 hours of work and I'm done for the day, and its not like I'm the energizer bunny when doing the work. I don't take naps during the day, and I am learning that if I take a day off and pretty much don't do anything, I feel better the next day. I am very tuned in that if I sit in that chair all day, I'm going to be in trouble so I try to keep moving forward. Hope I didn't go off the tracks here. Best to all.

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I’ve always been real active, but I would never consider doing three or four hours of Yard projects. I’ve got a small park across the street from my house with a quarter mile track. I go there twice a day every day and walk about a mile each time. I also go to the gym three days a week and spend an hour there working constantly. I really don’t feel much of any fatigue at all. After eight years of ADT, that’s one side effect. I haven’t had a serious problem with.

If you do some looking around, you will find that there are a number of articles about the need for exercise when you have prostate cancer and take ADT drugs. Exercise is essential to beat that fatigue for people that have it. And don’t be afraid of taking a 20 minute nap in the afternoon. A short nap can refresh you a long one can tire you. Look on YouTube and you will find a number of prostate cancer exercise videos. It’s the sort of thing where you start off tired you force yourself to exercise and by the time you are done that fatigue has reduced considerably. Somebody wrote about an exact experience like thus in this forum in the last week or so.

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It varies. I was a low T guy to start with 250. One grade on hot flash in 5 months. The fatigue is the biggest problem I have as I head towards my 6 months completion date. I literally have to force myself to get out and exercise and it is getting harder to push through to do it. I don't know if I will end up with a holiday or win the battle and never have to deal with it again. Knowing myself I will do it until I say I have had enough and pull the plug due to quality of life. I pulled the plug on my liver disease treatments and lived long enough to see a drug that cured 98% of patients which I did.

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@stevecando54

I will admit a lot of info goes over my head. I have been on the ADT treatment for a little over two years. Since the beginning my testosterone level has stayed < 3. I have no idea what it was before starting the treatment. I get I'm 70 years old, had no idea I would feel this old so soon. I don't get to count them but I do believe there is more then one truck running me over. I don't understand, if the testosterone level doesn't increase, where is the energy level coming from for the gym rats on here. I recently retired, been doing yard projects, I do about 3-4 hours of work and I'm done for the day, and its not like I'm the energizer bunny when doing the work. I don't take naps during the day, and I am learning that if I take a day off and pretty much don't do anything, I feel better the next day. I am very tuned in that if I sit in that chair all day, I'm going to be in trouble so I try to keep moving forward. Hope I didn't go off the tracks here. Best to all.

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I was 65y in 2021 when I started my 28 proton radiation treatments and 6 months of Eligard.
My T level dropped to 3.0 ng/dL, but mostly stayed in the high single-digits & low double-digits. My PSA stayed at 0.008 ng/mL the entire time the Eligard was in my system.

It’s well known that ADT can make you “feel this old so soon.” —>
https://m.youtube.com/watch?v=YE61HSAsFb0
The energy level comes from starting resistance-training exercise well before starting ADT. If you don’t start early, or if you start and then take a break, that’s a big problem.

My medical oncologist advised me about this (and I had read about it myself) so, as a gym rat, it was easy enough to ramp up my exercise routine during the entire time the ADT was in my system. (I have since backed down to easier levels.)

Yes, the lack of energy will show up in basic home activities just like you’re mentioning - even yard work and gardening. Remember that the hormone that gives you all of your male characteristics, including strength, fitness, endurance, etc, is basically being suppressed. Your T levels are now below most/all women’s levels. (I refer to ADT as kryptonite. Remember on the old Superman TV shows of what Kryptonite would do to him? That’s what ADT does to men.)

Resistance-training exercise is key to getting through ADT.

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