Lots of thoughts. Sharing maybe just to talk.
The problem with symptoms is they are very vague. I mean, what is “fatigue”?
I work out and get tired.
My job can be very physical at times and wear me out.
My job can also be very boring, lots of windshield time, makes me tired, especially on sunny days.
The rare time I watch tv during the day, I sometimes get sleepy.
…But I recover from each and every one easily. I may have to fight staying awake at work, but as soon as I’m out of the truck, I’m totally fine.
I can give dozens of examples and I’m sure others could too. But what exactly does disease related fatigue look like?
And not just fatigue, many symptoms are vague.
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Fatigue, for me was the feeling that I never had enough sleep, daily and into the weekend. I would arrive at work tired, I would go to bed tired and wakeup tired. My fatigue was also happening when I was getting up 4-5 times a night to go pee. So I thought part of my fatigue was related to my lack of enough deep restoring sleep. After my morning shower I would often be tired enough to call in sick and just roll back into bed and stay there. After lunch I would be so tired that I could sleep for 1-2 hours. There were times when I would get home and be too tired to eat my evening meal.
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3 Reactions@asgmiami1
You pose some great questions, musings...I have the same issue with "windshield" time, particularly going westbound in the afternoons.
I think that while I was going through treatment it was really all the same for me just a little more of the same. Got more tired in the early afternoon, napping became sort of needed. ( I wasn't allowed to work for the first 6 mos during and after SRT as Orgovyx isn't approved yet.) Part of the fatigue for me came from the inability to get good sleep, waking up with a hot flash in a pool of sweat three or four times a night.
I also couldn't really gain muscle, had to fight to keep of the "Lupron Belly" actually "Orgovyx Belly" in my case, I had joint pain as well, mostly in the knees.
I looked at all of the symptoms as sort of aging related symptoms, was it the treatment or the fact that I'm in my 60's now?
It turns out, now that I'm on an ADT break, it was indeed the Orgovyx, bearable but annoying as hell. In my case, activity was my friend. Gym, walks, hikes, chasing grand young'ns around was what kept me going. On the other side now, it's just the rare hot flash. Testosterone has only recovered to very low end of normal, but it's way better than the 3 it got down to.
Best of Luck to you!
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5 ReactionsFatigue for me is like never having enough sleep, even after getting bathroom trips down to one or two a night and eliminating the hot flashes. If I am actively using my mind, I am fine, but five minutes in a doctor's waiting room I can be sawing logs. Half the battle of physical activity is working up enough ambition to get my dead behind out of my chair. Then several minutes of breathlessness and leaden limbs and this 75 year old man can do what I did at 50 albeit somewhat slower
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2 Reactions@mj420
I get the actively using your mind part. I get tired when I’m bored.
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1 ReactionAll of us have different baselines for, and definitions of "fatigue". That is, if you ask 100 guys having no experience of prostate cancer, "What does 'fatigue' mean to you?", you'll get 100 different answers. Pile ADT and/or radiation on top of that, and it becomes impossible to identify a common "fatigue" side effect. One thing I've observed from ADT and radiation four years ago, and beginning the process again now, is that vigorous exercise probably swamps the independent fatigue effect of ADT. If I'm tired, it's because I've had an exhausting workout or run, and any add-on effect from ADT is somewhere down in the weeds, not identifiable. But everyone's different.
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4 ReactionsThe side effects of ADT, while well known among the member of this forum, are a combination of qualitative and quantitative...
I can tell you the number of hot flashes each day, quantitative, easily measurable. The severity, well, that's qualitative... what a "soaker" is to me, may be a passing heat wave to you. Heck, see, we use different terminology in describing the same side effects
There are other side effects which are measurable through labs such as CBCs, Metabolic Panels, step on the scale and that's quantitative, assuming all other factors remain the same, diet, exercise, stress...
Fatigue, muscle and joint stiffness, loss of libido, depression...qualitative, same for genitalia shrinkage, heck, even erectile dysfunction!
The questions are, how do they impact our lives and what are the mitigating strategies.
We generally separate them into two categories, those we can "control" and those where our medical team can assist.
For us, diet, exercise, managing stress are some of the mitigating strategies. I would never wear a pullover sweater or sweatshirt, too much hassle trying to take it off when a soaker hit. I swam in the unheated pool at the gym, did not soak in hot tubs and would not run the heater in my car in the winter. Akin to the Nike slogan, just take the damn nap...
Our medical team has some assistance with ED though not loss no libido, They can help with hot flashes, depression...of course, you have to ask!
My experience and sensing from these 12+ years is sadly, our medical team generally leaves us to "man up" on the side effects. It's only when you look them in the eye during your consult and say "what you got..." that they offer medical assistance.
For me, the two times on ADT, the side effects have generally been fatigue, muscle and joint stiffness, genitalia shrinkage, weight gain and hot flashes. I have not lost libido, experienced depression...
I have said this before, the only difference in my life on ADT was not what I did, it was how I felt doing it. Ok, maybe more naps...!
Kevin
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2 ReactionsThe symptoms can be vague, and if so count yourself lucky. I've taken at least two different drugs over the years for various (non-PC) health issues, hadn't ever really noted fatigue was that significant, and after a couple of years discontinued them, and in each case as the effects wore off and I felt better it was a revelation to me what it was like to feel normal again!
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1 ReactionYes, fatigue definitely has a relative component to it. Just gonna throw out some additional thoughts for the discussion.
When I underwent 8 weeks of IMRT last fall, I experienced both physical and mental fatigue. Of the two, I would say the mental fatigue was more pronounced. Many days I was physically capable of doing things, but I just didn’t have the motivation to do them. Maybe you could call that a mild form of depression, but it didn’t quite feel like depression. I didn’t feel hopeless, or helpless—just less motivated. I rolled with it, knowing that it would only last so long. By two months post RT I was pretty much back to normal.
A second thought is that fatigue, however you want to characterize it, is a risk factor for falling. Being in my 70s now, and having seen friends and elders (including my mother) suffer and decline rapidly after falls, I am hyper tuned into anything that increases the chances of falling. Tens years ago, I wasn't quite so concerned. These days, if I’m having an off day, I’m more cautious and measured with my activities—I don’t just power through. So, age is a factor that can add to the relative nature of fatigue.
Fatigue can also influence my behavior and how I interact with others. I tend to get more crabby and less tolerant when I am fatigued. No big surprise about that connection, but the point is that fatigue can be a side effect that has its own side effects.
I have several environmental allergies—I’m particularly sensitive to soil and leaf molds. Many of the symptoms are hard to describe (and fatigue is one of them), but man, when they hit me, I know it.
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2 ReactionsTo everyone, when I read all of your posts, I agree with everything said. All the situations are real. Fatigue from PC and ADT takes on many forms. It doesn’t help that PC is typically age related, which just adds to the complication. I’m just happy I’m here and I do the best I can to manage everyday. When I’m with my grandkids or my BFF, I always seem to get a special little boost knowing those moments are a bonus in my life that I otherwise would not have.
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2 ReactionsJust a thought here. Depression can feel like fatigue too.
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3 Reactions