Fellow travelers: I've been fighting the good fight 9 years. I'm now, successfuly, on 1-250mg of generic Zytegia with food and 5mg prednisone. I'm successful, because I've been keeping the basterd in the box with a low PSA for almost 3 years.
However, I'm always really dog-assed tired.
Therefore, my question is a chicken and egg one: I'm I tired because I'm fairly sedentary? Or am I fairly sedentary because I'm so tired? Currently I can occasionally walk a mile or two without falling over, etc. but I'm completely shot.
Any suggestions? I see my oncologist in a couple of weeks. my blood work, etc. has been ok. I'm also 65 and I carry a few more pounds than I should (no doubt due to inactivity).
I suppose the lockdown isn't helping, but exercise is permitted.
Thank you!
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Pwjpp55
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"I'm I tired because I'm fairly sedentary? Or am I fairly sedentary because I'm so tired?"
Personally, I think it's not either/or, but is both. It's a feedback.
This is why I don't want to do ADT. I am inherently lazy, and the thought of something helping me to be MORE lazy is terrifying. I already KNOW I should be getting more exercise, even without ADT.
This is an individual choice, so "advice" is off the table here. But do you want to live longer with less "life," or have more "life" now but possibly not live as long? The established consensus medical SOC nearly ALWAYS favors the former over the latter. We are almost made to feel guilty and unworthy if for some reason we might choose more QoL over merely LONGER life that has low quality.
But this is subjective. There is no OBJECTIVE reason that one must choose fifteen more years of a miserable existence over five or ten years of a NOT miserable existence. Every man should choose according to his own values.
For me, the deciding factor will end up being pain and other symptoms. Whatever the doctors advise to relieve severe pain, should it develop, will be what I choose. But in the meantime, I will pick less imposing and potentially more risky therapies. Those might include ADT vacations, where a little rise in PSA be damned (if not just ignored), or bipolar ADT, where with increased testosterone I risk a return of symptoms but might experience both remission AND a higher QoL.
My philosophy (for now) is, PSA itself doesn't kill people, but cancer might. A rising PSA is not always a death sentence. I do not plan on destroying my QoL at the altar of PSA-worship alone, even if PSA rise is a decent proxy for cancer progression.
But that is a philosophical position, not a medical one, nor one that is the position of a man with actual PAIN and suffering. (Being asymptomatic and purely PSA-diagnosed and MRI-confirmed as metastatic, my cancer is surely real but is effectively still conceptual, for all practical purposes.)
Aye Karamba! I too went trough chronic fatigue due treatments and a super bad urology at the time. I can relate. I got much better after starting Sam- e . Somehow with taking it I lost much lethargy . I wake up ok instead of feeling like sleeping in for extra hours. I’m now 59 almost. I still have about 1/4 of my old high energy . But it’s short lived with loss of stamina and strength. Besides that I A OK . No major pain. Lots of the little grinding stuff , I’m not a dr . I’ve done holistic diet and nutrition and I’d advise it to you . Maybe you turn it all around. It starts by dropping all suger . I did that and lost 35 pounds. I’m skinny with skin ganging in me. We must watch out heart health . These are personal choices . Green tea and ginger and even a good huskily finding could help with energy . Get an elliptical machine and tear it up every single day . Amazon can deliver one to your door . I’m working out side on landscaping our new home. I work for an hour or two at the most . Then I’m shot . Manual labor pays hell on my diminished joints . But I love working on the landscape . Good job keeping pc at bay . I’m in the eye of the storm myself. He lack of energy comes from no t. It was the fuel that drive our engine. Much irony in this . Take care
I can tell you that working out will make you feel better. Especially weight training. My KO told me that his office has some 2500 patients. And it’s like clockwork. Those that do consistent resistance training at least three times a week do great. Those that don’t, are exhausted all the time. Loss of muscle mass is debilitating but it can be reversed. Fear is a great motivator and my fear of turning into a tired old marshmallow motivated me. I can say that 21 months on lupron and zytega was a breeze. If not for the loss of libido and a little tiredness I’d not even know. We’re there days I did not want to go ? Yes. But I missed 4 days in 2 years. And each time I felt better after. You can do it. Just start.
I have the same experience - and have been banned from the gym (due to Covid-19) for 5 weeks now. It's painful missing the exercise. I'm expecting an exercise bike to arrive this Friday from Amazon.. decided I've got to do something.
Similar to those above, the usual recommendation of diet and exercise can help. So although much of what I write is redundant, it may help to read how many shared your struggle. Exercise and diet did help for me, physically and mentally. For two years, until ADT failure, I was on zytiga (1000 mg) and prednisone (5mg) daily and three-month depots of eligard and xgeva. Fatigue on certain days could be debilitating. With few exceptions, I did not skip some sort of daily workout. On some days, it was the slowest and least intense work-out one can imagine. That being said, since you are having trouble, first get a routine then slowly increase your activity. This can be done several ways. If you can or like to walk, try adding a short walk and after a time two throughout the day. (You can do other exercises besides walking) You can increase the duration or intensity of your walk. By the way, change your route. Don't expect too much and don't overdo it initially. If you are unable to do it some days, don't become frustrated or give up. (Easier said than done.) Salads are a good way to shed some of those unwanted pounds provided you do not load up on the extras: dressing, fatty or fried toppings. Wish you the best with this.
I'll second all the exercise recommendations and add quality sleep and relaxation. I'm in chemo right now, so fatigue is the order of the day, but strangely I have more energy this cycle than I had last cycle. I'm also sleeping better, and spend some time totally vegged out watching TV, so maybe that's making a difference.
As bedtime approaches, I take oxycodone and clonazepam to manage pain and anxiety overnight (note: be very careful mixing these!). Both of these can cause drowsiness which is what you want at bedtime. It's my personal recipe for a good night's sleep at the moment. Hopefully after chemo I can go back to melatonin only. But the basic point is that it's not just exercise, I'm using pills to manage side effects. I also take bupropion in the morning which is an energizing antidepressant.
Today was a decent day. I did about 30 minutes of yard work in the morning, including briefly getting out the chainsaw, then grilled a couple burgers for lunch. After lunch I went for a 4 mile walk with a few short bits of running, and then took the rest of the day off because that's all I got during chemo. Did I mention I'm currently on 6 cancer drugs? Before chemo my long runs were in the 10-12 mile range, so 4 is quite a step back for me.
I'd like to also recommend diet, but my best days recently have started with a chocolate chip muffin
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Treatment update
After 21 months of feeling good, fatigue now?
Introducing myself. Have mostly lurked for a couple of months, but time to formally say I'm here and start asking my own questions.
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