Hi Everyone, my friends,
My best friend, who is my wife's best friend, only because I have no friends, thinks I am making up the fact that I have no energy, "I'm lazy". I was put in the same situation with my wife and son a few years ago. How does one explain to another how ADT effects you, and why don't they get it? I'm at a loss, it's like me, and only me. I told Jane I would write this post, and we would view the results. In my life, nobody gets it.
Joe
Hi Joe,
I went on Lupron in November 2013 at age 65, coming out of a hospital after morphine level pain due to "mets" in my spine and lower abdomen.
I was easily walking 3-5 miles anytime I wanted and as fast as I wanted, running up and down mowing my lawns, working up a sweat, etc. and not worrying about any of it at all just before my diagnosis and treatment began.
After a couple of years on Lupron we went on a vacation to Yellowstone, and I ran out of gas on a mostly level 6 mile hike at 7,000 ft on a warm day. There was no way I was feeling like walking 600-700 feet down some canyon trail or up some mountain side the next day.
After nearly 4 years on Lupron, now with added Xtandi, I can still mow my lawn, but I have to walk it slowly, and take some breaks, particularly when it's hot. If we go for a walk in the park or the neighborhood, I average only around 2 mph now, and my comfort level range is under two miles, out and back.
It's not that I could not force myself to do it, or to go faster for some short period of time, but my body just does not want to do it, due to a general background threshold level of fatigue, and a slowly declining peak strength and endurance, compared to before.
Am I still able to do stuff? Yes. Do I consider myself disabled? No. Have I felt sad or mourned the loss of my former physical strength? Yes.
It's just a slowly evolving reality, and I deal with it. I find ways to work smarter, not harder. I find ways to plan and to spread out my physical tasks. I adjust my pace and my expectations. I joke around about it with family and friends. I ask for help when I need it for special tasks. Getting some exercise does help, though, compared to not getting any exercise. But, there are times when I just need to sit down or to lie down with my feet up for a while.
As a Clint Eastwood movie character once said, "A man's got to know his limitations." 
Charles
P.S. I also get significant points for doing some things inside the house like my own laundry, vacuuming now and then, doing some of the kitchen clean-up without being asked to do so, etc., etc. I'm not "that" fatigued! (or stupid) Ha. Ha. Ha. Ha. (We'll see how things evolve as I get more symptomatic someday down the road with disease progression, and, eventually, death. The same goes for my spouse, though, who is no longer a spring chicken, herself, but still pretty hot in my eyes, despite the Lupron I'm taking. Ha. Ha.)
Hi Joe, I am on ADT2 Casodex & Eligard the fatigue is at times debillitating, I can try to do yard work but after 10 -15 minutes of trimming, clipping or mowing I am exhausted & must sit down. I complained to my onc. And he prescribed Pro vigil which is a nootropic, it increases Dopamine and I use it on days which I really need to get something done. It really helps as much of the fatigue is mental, it can't give you strength but it gives you incentive so maybe you try harder, at least you want to get something done. Ask your Drs, it is really worth it. I know the fatigue is very real !!!😫
Wow that sounds good.. dopamine? Manuel labor ain’t what it used to be. I too crash after 20 minutes of yard work . Things that I used to be able to do with no end.. With age it’s normal to slow down . With APC it aged me 20 yrs easily .. now I’m crawling back in hope to build strength so I’ll be able to jump more hurdles down the APC road..
Hi Joe and Jane,
Men were not made to not have testosterone. I'm sorry that it makes most everyone so tired and weak.
You have FRIENDS and we read you loud and clear. Yes, we are not looking for sympathy - just understanding. And I agree that not many get it outside of our ever growing club. I am presently on "intermittent" status, and relishing in the return of a small degree of T. and an increase of energy and stamina. But I will never forget those days of dragging my "lupron legs" around and wondering if I would ever make it to the Finish Line.
I gave my girlfriend, my family and friends books and pamphlets about the side effects of ADT. But they still did not "get it". One of my sons called me a "wimp" when I expressed concern that I might not be able to make it back to the car while we were on a ten mile loop trail through the forest in Alberta, Canada. It is hard enough trying to educate ourselves about the ins and outs of treatments for our disease. To be saddled with trying to educate family and friends seems unfair.
Joining a gym or participating in an exercise regimen of some kind to maintain some muscle tone and keep up some level of aerobic activity was and continues to be really helpful to me, even when I have to drag my butt to the gym. So best to focus on what works for you and not expend your limited energy trying to convince others that your lack of energy is real.
Peter K.
Thanks Joe for bringing that up your comments and the replies were generally for me spot on and not without some lighter moments that we all need to cheer us up. Although70 which in itself takes it toll and having been blessed with a fit and strong body all my life but after three and a half years of ADT ( no chemo yet) PC is taking it toll. My biggest gripe are my thigh muscles which were like tree trucks are now more like bamboo sticks whilst my trunk area which has generally stayed in reasonable size range until recently has now strayed into the area of unacceptability. Fatigue can also hit if I allow it to but my fatigue moments also have to tackle my wife's enthusiasms for various activities and myself and Mr Fatigue together are no match for her. My bicycle has become battery aided walking speed slower and routed to avoid hills. But I do manage 20 lengths at local swimming pool most days.
I think that PC has strangely enough made me a more considerate person in that I seem to consider other people's problems and will spend more time just listening if nothing else
Joe, you can share this with your best friend. I've been on Lupron for about 15 years. I used to regularly walk about five miles every day. I have always had great endurance and was very active in a career as a carpenter/ contractor demanded.
Now I can hike around my block before needing a rest. My muscle mass has pretty much disappeared. I have mood swings occasionally. Hot flashes are a fact of life. Body hair is gone as is libido. I have to watch my weight religiously. It's not fun, in fact it's depressing sometimes. However by accepting this as the new normal, I am grateful that we enjoy pretty good health, especially after just attending my 60th high school class reunion and seeing so many of my peers with canes and walkers and hearing all the health related problems others suffer with. I'm especially grateful my name is not on that long list of classmates who have passed.
We still travel and enjoy our family, friends and each other which is something I doubt I'd be here to enjoy without ADT, so I embrace those minor inconveniences and enjoy my naps and everyday that is given to me. Fortunately my gal understands my new normal.
Norm
Dealing with the side effects of cancer are bad enough. I can not imagine if I did not have the support of family and friends. I have been on Lupron for about 18 months and had Zytiga added to the mix four months ago. The fatigue, muscle loss (and fat gain), joint pain and foggy thinking are all to real. I use to be able to ride a hundred miles on a bike. Now, on a good day (which does not happen that often), I am down to about 20. I sleep at least 12 hours a day, often a lot more. My 115 pound wife now has to bring in the 40 lb bags of water softener salt because I can no longer do so. My wife has make most of the decisions dealing with money as I am prone to make mistakes (this from someone who has over 120 issued patents). The list can go on and on.
The one thing I have is support of my wife and friends, including those on this sight, I can not survive without it.
My dear husband started Lupron and Casodex in Dec of 2013 at the age of 65. Ditto to many previous comments (and Charles, he definitely agreed with your post and still finds me hot!) He has definitely slowed down—luckily he can take naps most days. BUT we were certainly glad he was on an HT Holiday when we trekked 7 miles in Argentina! He walks most days—3-4 miles in the mountains where we live. His balance is affected and he has fallen a couple of times so he is on strict orders to tell me where he is going when he leaves the house
My man is no wimp! And he is not lazy. He is taking a toxic drug that keeps his spinal tumor at bay for now and strips his body of an essential male vitamin—testosterone. And he is alive. As far as I am concerned he can go as slowly or take as many naps as he wants. And, yes, he does all the laundry (not just HIS, Charles) and the dishes.
Give her some ADT and you both can lay down together...She can fake O's and you can fake foreplay. Happy days ahead...
Good Luck and Good Health.
j-o-h-n Tuesday 10/03/2017 11:32 AM EST
I understand. I think people assume because we don't have the "typical" outward signs of cancer that when our PSA is low we must be "fine". There is little tolerance at times. I would like to do the things I used to do, and some days I push through, but some days it is not possible. I own my own business and because of that I don't qualify for disability. There are times when I "have" to work whether I want to or not, and the consequences are painful. Because I'm not bald, or pale or whatever else people think I'm supposed to look like, I hear how great I look. I don't know what they see but inside, I feel like crap. It is hard for non-participants to understand the chronic issues with treatment. I just have to trust God that He will provide me what I need when I need it and get me through.
I really appreciate this thread. I had already scheduled an appointment for tomorrow with a disability attorney to discuss the inevitable.
In the past 10+ years I've had prostate surgery (and two other surgeries requiring hospital stays that arose out of either the disease or the treatment), external radiation (twice), lupron (intermittently at first and permanently for six years now), casodex twice to prevent flares, Provenge, Zytiga for 32 months, and now Xofigo. Next up will be Xtandi, then chemo when necessary. My employer has been good to me, and I've done my best to return that trust, but I'm a lawyer, and I no longer feel like I can fulfill the expectations. When I work a full day, I'm ready to go home tired (or sometimes completely wiped out) by 6:00. I simply can't carry out the client development that's expected, and when I do client work, I am concerned that the drug fog and distraction might result in an error (=malpractice). And that's the full days. There haven't been a lot of full days lately. In fact, this morning I got up and showered, then walked into the bedroom and told my husband I couldn't go in. I was tired and a little loopy. I went back to bed and slept three more hours. Fortunately, I could do some work at home after that. I've recently been pretty continuously on Alleve, Tramadol or Oxycodone for pain, and even so there are times I just need to sit still and do nothing to avoid pain spikes. My bowels are a challenge. I am sometimes nauseous. You guys know what I'm saying.
But I've thought I might be labelled lazy if I sought disability retirement at age 54. I've thought I could carry on a little longer. Reading your stories today has meant a lot to me. Thank you.
Yost.
Dear Yost;
Wishing you the best. If you need to do so, please apply for disability. It is not taking the "easy way out". Rather it is an acknowledgment of were you are. We have all been giving a hard weight to carry. You need to focus on fighting and at the same time enjoying your life. If in the future you feel more energetic you can always go off disability.
P.S. I have you beat on time sleeping/resting every day. I average between 11 and 13 hours a day. (But when I am awake I try to be active. Just finished a 23 mile bike ride.)
Wow , Dr Who, 23 miles on the bike, I am tired just thinking about that! good for you!
Thanks! I haven't been on a bike since July because of rib cage pain. Even then I wasn't in your range. Take care.
You are NOT alone Yost! Do it for you. You will be able to take better care of You.
Yost , You should file for SSDI, It is your money, they just let you get it early,2 years later you will have to be on medicare, which is not so great if you have better insurance, unless you can keep your current insurance as secondary. Anyone who ever thought you were lazy after 10 years of working and going through Cancer treatment at the same time is not worth thinking about. We Know! I do not think you need a Lawyer, as when I called to ask about it, they just asked my Drs. name and called me back a few weeks later and said I was approved, it makes it easier to dedicate a full time battle to Cancer. in My case it was CRPC with bone mets, and that was a guarentee. I wish you the best.
Dan
Thanks, Dan.
Just FYI. Stage IV prostate cancer is a kind of "fast-track" virtually automatic approval for Social Security disability. Be warned, though, that there is a mandatory 5-month waiting period. This can be covered by short-term disability if you have it (thankfully required in our state). We also were able to file paperwork with retirement funds and can withdraw without penalty (still have to pay taxes!) as well.
My husband retired at age 54 from a combo of stress and tiredness and with the philosophy that he should enjoy some retirement years where he wasn't flat out sick. And he could It was a really good decision for him, and now he's back to work part-time on his own terms. Social Security also has a great "back to work" program that lasts for 3 years where you can try going back but don't lose the overall determination and benefit (they just suspend payments when you make the awesome sum of $1170/month!)
Thanks. I had a good meeting with the attorney. Now in the contemplation phase while I'm away for a few days.
Yost Why not ease back and work say two days a week. Ok you might have smaller cases to deal with but what I found when before I retired that over the last three years working I went down to 2 1/2 days and you know what I found that I really enjoyed work again and looked forward to going in and this was in my early 60's.
I have already been easing back. I still go in every day, but my billable hours expectation was scaled back (along with comp).
Joe and Jane,
Thank you for starting this thread. Obviously, it has struck a chord with many of us. Les, too, is trying to live with Lupron’s side effects—the wasting away of muscle, the loss of desire and zest in general, and the distrust of his short-term memory. And we who are friends and spouses, to a lesser extent, feel ourselves on a slippery slope, too. It’s scary but made less so by the commraderie in this community.
I think the fatigue is more shocking to those who (Hey, Dr. Who) were bikers or runners as was Les. He can’t believe his not being able to rise easily out of a chair or stand up straight. We both worry as never before about forgetting an appointment, or, as happened yesterday, receiving a letter from a “debt collector” for an accident that never occurred. How I resented having to contact the BBB for no reason other than the evil, conniving, greed of a group of insurance-related individuals who are targeting seniors. The example below, however, demonstrates why at least some of us elderly are “sitting ducks” for those jerks.
Last evening I spent a couple hours struggling to cast You Tube to the TV. I was sure the cause of this new frustration was the iOS 11.1 Beta installation. In the end I moved our heavy Sony TV, got a flashlight, and followed the path of the Chromecast cord which, by now you have all guessed, had fallen out of the multiple receptacle wall outlet. For the first time, I wondered if we should surrender our acre of work and bliss and put someone else in charge of us. Les says, “NOT YET.” Mrs. S
P.S. Les has been proud of his Sunshine Kabocha squash hoping he would harvest 25 of them. Yesterday he pulled out all the vines, and, behold, there were 75! Now we have the onerous task of deciding what to do with them which makes Les feel less well.
Will you please write this post personally to my wife. She can't understand that I am only firing on half of my pistons because I am on Lucrin and receive radiation now. I start fresh every morning. But by two o'clock in the afternoon I want to sleep. And my oncologist warned me that the radiation on top of the Lucrin is going to take my energy.
So, yes you are normal. And keep it up. You can beat prostate cancer.
I get it, Joe_Kaminski, everyone on ADT gets it. We are no different you and I in.. Men folk without PC don’t even want to hear about it. You will surely find out who even give a rats ass about you.. I have.. To answer your question. People in general can not fathom being completely stripped of what made us tick as men before... lazy. ? I’ve talked to you before. It’s normal to feel isolated and one against the world .. I do sometimes You can find friends and morale support here friend. I have. You can get more energy.. But peoplethat lack compassion for others probably will never change. Unfortunately our society lacks in this respect .. Stay in touch..
Yes !! You said it perfectly.
Oh my fb god. Excuse my language. I had this same issue with my husband’s best friend and wife. Saying oh it’s nothing. It’s just prostrate cancer.
It’s hard enough for you to deal with it and your wife and family to understand without assine opinions
This makes my blood boil. Hate to say but guess what, he got cancer and well ... enough said .. I really believe a big issue with Prostrate cancer is this, they say almost 80% of men will get cancer in their life time.so no big deal They make it sound normal no dckgn big deal nothing to worry about, go about your business. It’s a sham. It’s a big deal and it’s needs more attention and focus for a cure ridiculous that certain scans are still considered experimental, and not covered by insurance. Even more so to fight for coverage of Zytiga etc. ok rant.
....a more considerate person. Love the battery on the bicycle 
I am taking a vacation
Am I imagining things. 
Okay, So I am Unbalanced!
I am in absolute pain this weekend.
Severe weakness in legs 
