I am just coming up to 3 months on ADT (Zoladex and Zytiga), undertaken alongside eSRT after BCR post-RRP In Dec 17, and it’s been going pretty well. PSA is undetectable, down from 0.11 in Jan 18, so no worries on that front for now.
The RT finished a month ago and didn’t knock me around, but in the last week or so I feel like a train has hit me.
I understand that everyone experiences ADT differently, and that many on here have had far more aggressive treatments alongside the ADT - but I just wondered if this sudden exhaustion is par for the course... I feel like the Duracell bunny... I started mowing the lawn today and the sweat poured off me, I didn’t think i’d be able to finish...
Any suggestions for getting back some energy would be most welcome, thanks.
Stuart
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Blackpatch
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Hi Stuart, I’ve been on ADT for 8 months and finished RT at the start of February. My low point was similar to you and was around 5 to 7 weeks after RT. Hopefully you are experiencing the combined effects of the ADT and RT and the RT effects will wear off soon. In the past few weeks I’ve found the energy to go to the gym and that seems to have increased my energy levels back to where they were pre RT.
Thanks Mark - you may be right, but I found the RT to be kind of a non event. Still, I guess there’s might be a delayed effect... and you’re certainly right about the gym. I have been doing that off and on, and it always makes me feel great... I guess I just need to make time for it regularly instead of the current piecemeal approach...,
Stuart
Welcome to our esteemed club of castration .... idid the RT also and double adt until orchiectomy ,still on adt for life . Fatigue is a major side effect. I dug weeds with a shovel for about a half hour . Felt like I could flop over right then and their . I lost a lot initially for 11/2 yrs told not to lift more than ten lbs due to tubes out of my kidneys . I lost all strength muscle and balance . It will get better if you stay physically active ... this can take a tole on your outlook and demeanor . Do anything to promote daily happiness . The side effects of RT ,in my experience have stayed with me ... nowhere near as bad they were the first two years. Hang in there ... it’s a lonely bumpy road . Give and receive as much love in this life as you can muster up . We suffer in order to live.. make the most of any day in the sunshine. I went thru a range of self loathing and fatalistic ideations . Don’t waste your time.. Stay away from depression and Enjoy LiFe .. no guarantees for any of us in this APC handbook . You ain’t alone on this journey amigo . We all go thru the same Rigamarole .. It will get better .. Scott 😎
Thanks mate -all sounds like very good advice. I have a lot to live for and a lot to be grateful for too - no lack of resources, so no real excuses for not making a good show of it - I actually thought I was doing pretty well until recently when the wheels just fell off - but it sounds like I just can’t afford to let the physical activity slip.
With advanced Stage IV disease I've been on continuous ADT for almost 5 1/2 years since original diagnosis at age 65. In my experience there have been differences between the strength & peak energy & stamina aspects of it and the temperature regulation & hot flash aspects of it.
For me, the muscle-related stuff developed slowly. A slow decline in things. There has been very good advice here about how to try to stay ahead of that. My general approach has been to listen to my body. If I'm really sucking air on what should be a routine home chore, sometimes I break it up into smaller chunks. Or "work smarter, not harder". Or ask for some help or use some kind of tool for the really "heavy lifting". It's not always easy to reconcile one's internal view of former roles and capabilities before older age or disease or drugs symptoms creates undeniable changes. There can still be losses, despite best efforts. Sometimes the old Clint Eastwood line from one of his movies applies: "A man's got to know his limitations."
On the temperature regulation & hot flash aspect, I live where we get some Really hot days in the summer. On ADT I have been much more susceptible to the heat and overheating during outdoor exertion. Moving the heavier yard work to earlier in the cooler morning is one thing that helped. Taking a little 5-10 minute break to sit in the shade and completely cool down before starting again can really help. Sometimes having a fan blowing on me, while sipping a cold glass of water as I cooled down would help, too.
After about 3 years I went on added Xtandi. My fatigue and related side effects continued on a slow downward trend. About a year ago, around age 70 I decided to turn over all the heavier, hotter outside lawn care work to a lawn service. It was time. I went through some emotional stuff with the sense of loss over that, too. Likewise, when we decided it would be better to accept the help of younger neighbors to get up on a ladder to put up Christmas Lights decorations, instead of risking my doing it.
Life goes on. Exercise, weight control, and doing what one can in the world are still important to the overall quality of that life.
Thanks Charles - I am hopeful that I may yet get a reprieve after a couple of years, but in the back of my mind I keep thinking this could become permanent, so I am trying to avoid just ‘coping’ as opposed to making a real go of it.
And thanks for your very practical advice - my wife keeps telling me to get someone to do the gardening, but I kind of like to do my own stuff... so I’ll hang onto that for a while yet!
I can still get 1/2 days work done, but some times takes 2 days. My 3 year old grandson loves to do dolly races across back yard, he beats me almost every time. He goes jet speed on his tricycle and has to stop and wait for me to catch-up. Life is good, just at slower pace.
I've found that sharing some of the work that may be too taxing for me (not ADT or RT limiting yet for me, but osteitis pubis) has multiple benefits besides just getting the chore accomplished: family feels that they are able help (very important for the children), you get to pass on knowledge of some techniques for efficiency and quality and getting to sit back and look on with pride and see the pride upon their faces after their accomplishments. Not saying to completely turn over the work to others -- I get the feeling from your posts that would be as impossible for you as it is for me -- but to become more of the 'working project manager' on some days and for some tasks. Examples: I finished sanding the custom kitchen bookcase that has been waiting too long for paint and then turned over the painting to my wife. As I relocated raspberries, my daughter wielded the wire brushes and spray can on the wrought iron plant stand. Walked my son through the steps on mowing a neighbors yard and realized that he thinks a lot like me in terms of breaking the large job down into logical parts. I now have confidence in him mowing our more complicated arrangement of planting beds and lawn when the ADT/RT slump will probably hit me this summer. Yes, I probably could have done a better quality job on all of the above. Yes, I have a bit of a perfectionist streak in me -- which my wife would say is an understatement. Just looking differently at things that I have a hard time truly calling chores since I actually enjoy doing them. Now if I could only get them to master taping and mudding drywall or plaster crack repair . . . .
May you find sun after sailing through this Decipher squall.
I'm new here but I feel for you and maybe myself in a few months on ADT. I guess this post helps me as I have almost finished 1 month on Bicalutamide and in a few days will have the first injection of Zoladex. (don't like all this stuff and aim to get off it ASAP). Not one for the medication trap. I am doing as much as I can to reduce my very high PSA myself.
So I can only suggest what I do and what works for me in reducing the side effects, It might help you.
As we age our body loses the ability to hydrate so we are not able to hydrate as easily as we did, (I drink water and lots of it) water with more hydrogen ions and a pH of 9.5. one glass first thing in the morning @ 11.5pH, yes highly alkaline to neutralize or reduce the body acid. This water enters directly into the bloodstream so hydrates the body quickly, (athletes use it to hydrate whilst in competitive competition).
I ride a bike every day and have started on an upper body exercise lifting my own body weight only. I live in NZ and the exercise equipment is free to use in the parks.
I am reading about +ve and -ve ions and body balance, this and the water remove what the disease craves. So, in theory, it should die.
Hey, I'm just learning so this is only giving you something to look into. It's natural makes a lot of sense and give me a focus with an endpoint.
on another point, I keep hearing stay or be positive. Does anyone know what that actually means? I already had a PMA. Just wondering what other people do to maintain that?
From 100's of posts I have read medicine keeps you miserably alive and no end to it. This is my first post so take it easy on me :))
Godfather mate - nice to hear from a fellow Antipodean, though I’m a Melbourne bloke myself. We’d surely like to borrow your PM for a few years, by the way - both on offer on our side of the ditch are just plain crap!
Anyway, the exercise and drinking sound like good advice - I have been very dry lately, though I’m blowed if I can see why testosterone decline should make you dry...
Good luck with the Zoladex - I have my second shot this coming Tuesday, and it’s been fine. I think it’s the Zytiga that’s been making the running on the testosterone front so I’m not sure the Zoladex has got a look in.
I always enjoy your replies... and yes, I know the exercise helps... I just seem to be too busy to do it... and don’t worry, I already know precisely how stupid that sounds!!
One question though - is the ‘no carbs’ advice primarily about weight control, or do you think the loss of testosterone actually reduces the body’s ability to deal with carbs and they make you tired?
Anyway, thanks for your kind attention
Stuart
It is important to rest as well. There are times to push yourself and then take a break. You will put weight on around your belly if you eat too many carbs. I keep a list of activities I want to accomplish so that I get to them another day. Stay strong!
I take lots of little breaks to just relax, and take a short afternoon nap every day. I find this helps. Also, I’m taking bupropion to help with depression that ADT brought on... this seems to have given me more energy. And keep moving... I can’t really do too much really intensive exercise as I have metastasis in my hips, but a couple half hour walks every day with the dog helps as well.
Take your wife's advice and let her mow the lawn or buy some sheep (a lot of them down under).
You never mentioned you age. Your age would give us a better idea on how to help you. You know what I do when I'm tired?.... I lie down and cuddle with my blow up doll for a little while. That rejuvenates me and does wonders for Dolly too (and she doesn't nag me about the lawn).
The answer is in your lab tests. Ask your doctor for the results and look at Vitamin B-12 levels, hemoglobin level, Vitamin D level, oxygen level, calcium, and if you are diabetic your glucose level. Then ask your doctor before you take something.
I recall my post -radiation reaction. I grossly underestimated how fatigued I would be.
The 'team' warned me of fatigue and I found that within a few weeks, I felt like I was almost hitting bottom. It took months to start to feel (significantly) stronger. Today, about 14 months later, I am still in recovery mode.
You have the added burden of ADT. I stopped ADT about 6 months ago. I'm still feeling some of those side effects, which were cumulative for me.
I'm waiting for my T to recover.
Overall, it sounds like you are coping well / adjusting.
Consider it your new normal, but you should improve and gain more energy as you continue to heal from the radiation.
In terms of radiation side effects, at least for now, I don't feel anything adverse from that particular aspect of the treatment anymore.
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