I competed my 40th and last radiation treatment a little over two months ago. I am also about six months into a two-year course of hormonal therapy (ADT) - first with Lupron and now with Voladex. I continue to be moderately and sometimes severely fatigued, sleep poorly, and have recently developed fluid-filled hands and feet, particularly with exercise but not limited to that. My fatigue is the larger concern, much larger than sexual dysfunction or the things providers usually warn you about. I don't feel safe to drive and hardly ever go out past 4-5 pm. I've managed to stay in relatively good humor due to forced walking (twice a day, about 3-4 miles daily) and a supportive family, but it's a struggle and I wake every day hoping that I'll be more energetic. So far, there's no sign of improvement. One of my fears is that the ADT is causing the fatigue, which would mean enduring another year and a half of this. Please let me know if you've experienced longterm fatigue post-radiation and if you've found any remedies. Curious if anyone's had swollen extremities with this therapy, too.
Continued fatigue and swollen extremi... - Prostate Cancer N...
Continued fatigue and swollen extremities post-radiation and with ADT
Some guys have tried adderall or modafinil - ask your oncologist
In a similar situation, 6 weeks out from IMRT. Fatigue, hot flashes, reduced libido, all the classic side effects. No swelling of limbs, however. I have found exercise helpful but mental attitude the most important. Depression often accompanies this process and that can mean fatigue. Perhaps an antidepressant would be helpful?
Thanks for your reply. Oddly enough, I am not depressed, and I'm pretty sure I owe this to a positive attitude, exercise (walking 3-4 miles a day), and support from wife, family, and friends. But the persistent fatigue is life altering: I can't safely drive and so I'm pretty isolated, and I have a mental fog that makes it difficult to accomplish tasks or work as productively as before. I do wonder if anti-depressants would help with the hot flashes and maybe with the fatigue. Something to explore.
I am hesitant to add any more chemicals to the mix already in my body, so I just put up with the 12 to 15 hot flashes I experience every day. I am going to explore acupuncture and will let you know the results. Hang in there.
Good thought re. not adding more chemicals. I'll probably abstain from any more medication including anti-depressants unless the hot flashes become unbearable rather than the nuisance they are now.
Jazzy I believe your fatigue is from the radiation which will last up to 6 months after treatment. You should start seeing some improvement at 3 months. Keep up the exercise, however I also had swelling in my hands resulting in trigger finger on one and pain in my joints. I believe this is due to the Lupron which ended for me 5 months ago. What made it worst for my hands was my resistance training which is needed to prevent muscle loss. I have noticed that warm water and movement helps my hands in the morning. Also if I run through the pain my knees loosen up. Keep exercising and hang in there.
Very interesting, and thanks. At this point, if the fatigue goes away six months post-radiation, I'll be happy. (Better than the prospect of having to wait out two years on Lupron.) Doctors should be more careful about telling patients that they can pretty much count on the fatigue resolving within a month. It sets up false hopes and frustration when the symptoms linger on. It's great you're continuing your resistance training. I did a lot of lifting before radiation but am now just walking a lot, doing pushups and occasional curls. All that has helped but I'm not happy about the muscle atrophy. In other words, I need to get back to the gym.
My experience is that many oncologists are guessing when it comes to treatments and side effects. If you ask them for clinical studies, they are often stumped. Best to do your own research and draw your own conclusions. Who knows? You might do better than the average oncologist.
Lupron causes anemia in many patients. May be the source of your fatigue. Lupron also causes neuropathy in many patients. May be the reason for your extremities swelling. Good luck. I don't think that either condition is easily treated. Like you, I have both conditions.
Interestingly, my blood tests show that I'm somewhat anemic, but my primary care doctor thinks it's within the normal range of variation even though the most recent tests shows the anemia has worsened over the past few months. I will, however, follow up with my oncologist to see if she thinks it's worth treating. More and more, I'm becoming convinced that side effects of prostate cancer therapy is a dismal science with very few controlled trials aimed at discovering which if any treatments work better than doing nothing. It's trial and error for us.
I was on lupron/eliguard and Zytiga for 8 months before radiation. The fatigue I had before radiation is no better or worse since I’ve finished. My guess is the lack of testosterone is the problem. I can get busy and hold it off but as soon as I stop it hits me. Nap time. Only thing that slows it is a pill. Drugs are your friend. My drug of choice is Ritalin. .05 mg twice daily. Of course my doc made sure it was ok for me. I even checked with a neurologist. I will not sleep for another full year of scheduled ADT which could end up being much longer. Good luck.
Yes, more and more, I figure that the fatigue will stay with me for the duration of my ADT treatment, which means until the end of 2020. It's no fun to resign oneself to this, but it's better than expecting relief "any day" and then not getting it. I also agree that exercise helps enormously and that the fatigue is at its worst when I'm sedentary. All one can do is forge ahead. It's really hard but what's the alternative?
Tal Allen gave you some tried and true drugs that help. My choice Ritalin has been given for years to kids to slow them down. It has the reverse affect on us adults. Picks me up and allows me to live. Don’t take them after 2:30 in the afternoon. Don’t need to sleep all the time. I can’t exercise all the time. I want to work. Not ready to quit.
I've thought about Ritalin but am concerned that it may interfere with sleep. I've got fatigue and sleepiness -- two different but additive effects. It may be worth a try, but I also worry about all the meds I'm on and their possible interactions. Lately, I've added a diuretic to combat fluid retention (a likely side effect of ADT) that has caused swollen extremities and painful joints. Getting back to Ritalin, your advice about not taking after 2:30 pm is a good one. Thanks for the advice.
Dr first of course,but I’m pretty sure he will give you some help. If you are like me the fatigue has to go. I thought if I worked that would be the exercise they want you to do. It is not. Never been an exerciser but I’m going to start. Doubt I could do it without Ritalin for now. I’ve lost considerable amount of muscle also which is another reason to start the weights. But you have to be awake to exercise.
Exercise definitely helps. I'm walking 3-4 miles a day, lifting dumbbells, and doing pushups and sit ups. I've lost quite a bit of muscle since taking ADT but the exercise helps me feel better physically and mentally and tones me up a little. In other words, I do what I can even if it's not enough to fully counteract ADT. Recently, the fatigue seems incrementally better than it was a few weeks ago, though somedays it's hard to tell. Overall, I'm still tired much of the time but it's not quite as overwhelming as before.
Starting today and I’m sure it will help. Sometimes my balance isn’t what it should be and I’d guess that’s the muscle loss. Thanks for the input.
ADT is an evolving picture. The latest problem is stiffness in my wrists and fingers, with a trigger finger effect that's most pronounced when I wake up. I've taken to wearing a splint on either hand for short periods of time, which brings some relief especially after working at my computer. I also use a squeeze ball to strengthen and loosen up my hands, and use ice or heat to get some relief. I've read that ADT does cause joint pain and some patients report trigger finger, so I assume that what I'm experiencing is indeed the result of testosterone suppression. I figure the next 1.5 years on ADT will be a constant battle against side effects.
I wrote a post a while ago about trigger finger / ADT. Got a lot of comments mostly denying any link!! I got Trigger finger about 1.5 years into this as I can recall!!
Being treated for it now!! Had a steroid shot two weeks ago that did not help at all!! Next, they cut!!!!
Also, I was never depressed for 62 years!! I lost a-lot of living due to ADT but gained 3 to 10% improved survival chances (depending on who you talk to). I made a conscious decision to improve my odds while unaware of the severe SE’s that I would encounter. I mention this because (although I can’t recall the official term but) drastic changes in your life can cause (lets call it) acquired depression of which I have recently been diagnosed and started a Prozac like med last week!!
I’m as proud of this as much as I am my genitalia, but I did have one day since I started, one say in almost two years that I was happy myself!!! Then the next day, back into the emotional dumpster!! Doc says that is how it works!! The good should start to out number the shit!!
Moral of the story, I gave been told POINT BLANK that this will not help ANY of the SE’s from ADT discussed earlier in this post. The only thing that will make them go away naturally is the restoration of testosterone! There are treatments as mentioned above, but thats “more chemicals” again.
I have heard others sing the praise of Ritalin but my PcP would not prescribe it to me!!!
There are posts out there about ghis!!
Jc
Good luck
My oncologist, whom I generally like, denies that the swelling of my extremities is related to ADT or radiation, and though I haven't asked her yet, I doubt she'd recognize trigger finger either since it's not mentioned on the fact sheets she gave me when I started treatment. I'm so grateful for this site because, here, patients can report side effects and get a picture of whether others have suffered the same effects. I have some emotional dumpster days myself, though thankfully I don't have many. But much of the time, I feel like I'm teetering on the brink and any bad news could send me over. Coping with the treatment side effects is a daily battle. I'm not sure anyone can fully prepare a patient for SEs.
I've been on eligard for about 2.5 years. Swollen extremities are really a side effect. Look up side effects on Google. Fatigue is something I have had to. I work three days a week and sleep 10 to 12 hours the other 4. Dysgusia is weird. Nothing tastes good and I often have a bad taste in my mouth. All side effects have to be balanced by the alternative. I can adapt to side effects but not to a casket.
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