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New guy with questions.

NFHS profile image
NFHS
66 Replies

On Lupron. Is fatigue common?

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NFHS profile image
NFHS
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66 Replies
Tekton profile image
Tekton

Yes. Oh and yesss lol

NFHS profile image
NFHS in reply toTekton

Thanks!

NFHS profile image
NFHS

Thanks!

NPfisherman profile image
NPfisherman

Welcome to the forum...yes, fatigue is common....a number of us are gym rats to try to offset some of the SE's...the release of endorphins helps you to feel good (at least it does me). Your brain may feel foggy...more forgetful...Most eat lots of veggies--broccoli, cauliflower, tomatoes--cancer nutrition...Many knowledgeable posters here including Nalakrats , who responded to you,and pjoshea13. Sorry to find you on this journey but you are not alone ..Good luck, brother...

All the best,

Fish

NFHS profile image
NFHS in reply toNPfisherman

Thank you. I really appreciate the feedback.

NPfisherman profile image
NPfisherman in reply toNFHS

Again, welcome.....pjoshea13 is our most prolific poster... knowledgeable and a nice guy.. he posts about 4 or so articles per week...I advise reading them.....we follow clinical trials...there are many trials in prostate cancer...The DoD pumps huge money into prostate cancer research.....the big elephant that needs destroyed is castrate resistance...there are several drugs in trials for that...TRC 253 and TAS3681 are two...Here's hoping that Stage 4 becomes more like a chronic disease and less like a short term death sentence...

Best of luck to all

Fish

EricE profile image
EricE in reply toNFHS

Yeah, straight up. We all have an unfortunate common denominator. You are among friends even when we disagree about treatment. There aren't any bad questions here.

whatsinaname profile image
whatsinaname in reply toEricE

Agree 100%, EricE. Absolutely on the dot.

Tall_Allen profile image
Tall_Allen

Yes. Exercise may help.

Schwah profile image
Schwah

My MO strongly recommended resistance training and I hired a trainer and I lift weights very hard 3 times a week for about 80 minutes. I work out very hard with multiple reps to exhaustion. I feel pretty darn good on the stuff. Many of the guys here will tell you vigorouse and consistant exercise changes everything while on lupron. Many studies also show it has survival benefits to boot. Sometimes it’s not easy, but well worth the effort.

Schwah

RayF profile image
RayF in reply toSchwah

I feel much better working out, if I miss several days in a row, I feel sluggish and lazy.

Don_1213 profile image
Don_1213 in reply toSchwah

I regularly do weight/resistance 3x a week - about 90 minute session, reps usually to exhaustion, plus 20 minutes on a bike and 20 on the treadmill.

Yesterday I started feeling a bit of a setback (not able to do quite as many reps) - attribute it to 25 radiation treatments. Other guys who've done the same radiation treatment (25 primary, 20 "boost") mentioned that's about when you can start to feel it.

Lupron didn't seem to make a lot of difference except for frequency of naps.. and very brief infrequent hot flashes once in a while (usually lasting no more than 2 minutes, short enough that I'm guessing I never notice some of them.)

Schwah profile image
Schwah in reply toDon_1213

The power of tough resistance training while on Lupron. Those of us who do it swear by it. I pray we can pursuade some of the others to bite the bullet and get out there.

Schwah

Tjc1 profile image
Tjc1

If that is all you have consider yourself lucky!

Jimhoy profile image
Jimhoy

Yessssssss. And fight fatigue ASAP. I was / am painfully uninformed for many months into my treatment. Didn’t find support groups like this until the damage was done!! I just gave into the fatauge which manifested into obeastity and severe joint pains (couch pototo symtoms) !!!! Upon realizing my mistake (?), I found that trying to right the wrong is a real moth#$&*@%er.

Take this as the gospel truth......you don’t need to be in a triathlon, just get up and move. Get up / out as much as possible daily or (again) at a minimum, just get off yhe couch and move. If you need a nap, take a nap!!! Depending on you SE’s, and you’re able to work out, “just do it”. If not, stretch, walk....... move your joints.

You will not regret it!!!

whatsinaname profile image
whatsinaname in reply toJimhoy

Excellent reply. Moving around is key. As someone had earlier written, try isometrics.

Google for more details, if you need them.

Litlerny profile image
Litlerny in reply toJimhoy

A big AMEN to you, Jim.

whatsinaname profile image
whatsinaname

My suggestion is to not miss a post of Tall_Allen, if you can help it.

The others mentioned are also OK but if you are short of time, read Tall_Allen.

He has a blog where all of his links can be read. Well worth it, imho.

arete1105 profile image
arete1105

The reason for fatigue from Lupron is because it lowers your testosterone levels. That is where men get their energy and strength. That is why body builders and sports figures in the past have taken T shots, for the extra energy and body build.

whatsinaname profile image
whatsinaname in reply toarete1105

Absolutely, arete1105. Makes sense to me. Thank you.

Break60 profile image
Break60

Yes it’s the number one problem imho. I hate it! Working out vigorously is the only thing I’ve found to mitigate it.

Hex40 profile image
Hex40

I just joined the local gym and plan to workout regularly. Today was also my first day and my arms feel like rubber but I know this will help me in the long run. I have been walking a lot but the upper body was lacking so I hit some weights today as well as a stationary bike. This is from a just retired IT jockey who spend the last 43 years sitting behind a desk. So I have a lot of catching up to do.

Don_1213 profile image
Don_1213 in reply toHex40

If there is a knowledgeable personal trainer at your gym it might be worth a session with him to work out your basic routine. It's especially helpful if they're older and not muscle bound. Mine owns the gym, and in his late 70's is still a tennis champ in the senior divisions. He often has helpful advice about making the most out of the exercises (like recently - SLOW way down - turns out resistance weights are MUCH harder done slowly. The advantage is you can drop the weight a bit which puts less strain on your joints, and still get good exercise.)

Hex40 profile image
Hex40 in reply toDon_1213

It’s on my to do list. There are 3 personal trainers listed and I plan to consult with one of them. Still trying to get the lay of the land.

WayneSC profile image
WayneSC in reply toDon_1213

I completely agree with this and if you are in the US, Medicare will pay if your doctor prescribes strength building. Will only take 3-4 sessions. Fortunately I have a physical therapy game that also sells gym memberships.

arete1105 profile image
arete1105

Question- it seems to me that if your energy reserve is low, the last thing you would want is to tap into that reserve. Working out, it seems to me, is like a 4 cyl tractor pulling an 8 cyl load. All you are doing is over loading the tractor and using up all its energy. Seems to me it would be best to conserve ones energy supply.

I don't see how over loading ones energy supply can result in providing more energy when that reserve is very low to begin with. Maybe exercising can draw energy from other sources. But is working out just a distraction from the "nap" while at the same time it is drawing down on ones energy reserve?

Where is the energy for the workout coming from while at the same time that same "resting" energy supply wasn't enough to counter the nap?

whatsinaname profile image
whatsinaname in reply toarete1105

I am 100% with you on this issue.

Mindless walking, cycling, lifting weights in excessive quantities does not seem to be the right way to exercise for an advanced prostate cancer patient taking severely debilitating drugs. Mild isometrics and a bit of walking (the amount that one can tolerate) and moving around seems to me the way to go. I may be wrong, but unless proven so, I will continue with my regime. And, that does not include heavy exercise, non-proven dieting and consuming endless supplements, praying for mercy/help to some deity.

Thanks for having the courage to speak out when in a complete minority.

Mathes72 profile image
Mathes72 in reply towhatsinaname

To each his own

whatsinaname profile image
whatsinaname in reply toMathes72

Goes without saying, I would think.

math33 profile image
math33 in reply towhatsinaname

I'm not able to exercise my knees and ankles are run down, not much left. But I am able to get motivated and revitalized I just drink coffee.

Larry E

This spring I will start fishing which helps my energy level.

dress2544 profile image
dress2544 in reply towhatsinaname

I am also in the same path. I do walk 3 km daiy. When I am engayin some other works I won't be able to walk. That is the only exercise I can do now. I am unable to do any rigorous exercise because of my tiredness. What to do. Let it go like this.

whatsinaname profile image
whatsinaname in reply todress2544

Do whatever you can, Ajith.

Overexertion, almost by definition, is counter-productive. I am firmly on the side of taking it relatively easy in all matters. Might as well enjoy whatever span of life we have left, don't you think ?? :-)

All the very best, old chap. You can count on my good wishes.

yamobedeh profile image
yamobedeh in reply toarete1105

I thought so too, but when I asked here about how to deal with the fatigue, debilitating in my case, I was told to do weight training, especially when I didn't feel like it, and it worked. Really well. Do it. I think it was Nalakrats, among others, who made that suggestion. You'll learn whose advice to give credence to after you've been here a while.

WayneSC profile image
WayneSC in reply toarete1105

I do not find this true. The longer I avoid regular exercise, the deeper the hole I am digging.

rosewebb profile image
rosewebb

I think it did make my Dad tired, but the biggest problem was it caused a lot of pain in his legs. Or maybe that's just old age and he assumed it was the Lupron. Not sure.

Mkeman profile image
Mkeman in reply torosewebb

Get a referral to a physical therapist. I go once a month and she suggests exercises to strengthen muscle groups and to help ward off osteoporosis She keeps track of and tests muscle mass.

EricE profile image
EricE

The problem is Lupron reportedly causes muscle wasting. I noticed it after 3 months on the stuff. I took a tumble hiking when I found I couldn't lift my left leg over a downed tree. Then I noticed I was scuffing my feet. For me, exercise is instantly incentivized. I have to exercise or my muscles will wither. Movement equals Life.

redbank profile image
redbank

Ayuh !!

Hohman profile image
Hohman

Yes...I have always been high energy naturally but it slows me down and joint pain...this does subside when I move around more... walking briskly mostly and trying not to sit still too long...I feel like excessive alleviates the stiffness

TNCanuck profile image
TNCanuck

Some good advice from the guys. Break60 had shared this previously...you might also find it worthwhile.

prostatepedia.net/blogs/pro...

j-o-h-n profile image
j-o-h-n

I may be an exception to the rule.....I do not suffer from fatigue... just lack of nookie...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/05/2019 7:05 PM EST

Jimhoy profile image
Jimhoy in reply toj-o-h-n

I’ll take a nookie, a oldkie, a skeletonkie, henakie at all!!!!!

j-o-h-n profile image
j-o-h-n in reply toJimhoy

A-hoy there Jim.... damn the torpedoes full steam ahead...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 02/05/2019 7:58 PM EST

Litlerny profile image
Litlerny

Answer one: YES...fatigue is almost certain to occur. Get used to it. 😎

Answer 2: Gol! 🏌️ ⛳️...maybe followed by a nice 😴 nap. Don’t overextend yourself with whatever form of exercise you choose. It is counterproductive.

whatsinaname profile image
whatsinaname in reply toLitlerny

Absolutely, Litlerny.

Makes complete sense to me not to overextend.

Cheers !!

Crmp55 profile image
Crmp55

Oh hell yes, been going through this for going on 6 years. Not fun, I also get an Exgeva shot once a month, another med that causes fatigue. Doc just asked me if I would like to stop shots to eleviate side effects, I told him I was afraid to stop, to which he agreed. Soooo carry on London weather the storm. Exercise hell I can hardly walk around the grocery store, of course maybe old age is rearing its ugly head I am 84 years young, shooting for 90. Keep the faith, you got lots of time left

Litlerny profile image
Litlerny in reply toCrmp55

You go, dude! Well said. 😎

larry_dammit profile image
larry_dammit

The lupron is doing away with your testerone so you are losing muscle mass .

charlesmeyers1964 profile image
charlesmeyers1964 in reply tolarry_dammit

thats what it does remove muscle mass and lower ones testosterone zytiga lowers ones psa

Oh gosh yes. Fatigue and hot flashes.

in reply to

So far, only the hot sweaty flashes, like 10 times a day or more.

ARIES29 profile image
ARIES29

Yes in a word NFHS. I went with the luprin shot for 3 months & not realising what was happening to me i just sat around & slept & slept & went to sleep at the wheel while driving one fateful day, my mistake. I threw it away & the casodex & now still have the brain fog & 10 kg ectra weight. There is good advice here & i must agree that ecercise is thhe key if you remain on the ADT. Keep fighting.

whatsinaname profile image
whatsinaname in reply toARIES29

Exercise yes, but one must not overdo it, imho. We can agree to disagree.

Rottney profile image
Rottney

Yes, sadly.

yep

Patrick-Turner profile image
Patrick-Turner

Not if you keep cycling about 220km a week. I've had ADT since 2010, had Cosadex, Zytiga, 5 shots of chemo and no Lu177 and cancer in bones and the cycling, website work, workshop work, house keeping and house maintenance work left me with no time to feel fatigued. Head goes on pillow, I am asleep soon, but I wake up 4 times to pee, back to sleep in 2 minutes, and I get about 7 hours average but at 71, stage 4 Pca, no fatigue, and last 3 weeks spent hard time repaving around a pool and putting up new fence, and not once did I ever need a nap during the day. But when I am 81, or 91, things will have changed, but I think by then I'll be forced to keep working because they say heaven needs its infrastructure all replaced. I also found I had little trouble with hot flushes, muscle loss, or weight gain. My average speed on bicycle did reduce from about 28kph average in early 2010 to about 25kph within a year with no testosterone. I have no wife so when all sexuality was exterminated by 2015,

I didn't mind, because without ADT I'd have died.

Patrick Turner.

Zee5 profile image
Zee5

Exercise is very critical in your physical and mental well being. I've been on Lupron steady for over 1.5 yrs and on Zytiga for 13 months and usually hit a wall around 2 or 3pm. I'm retired now so can exercise in the morning - 3 days of weight training and 2 days of cardio, usually take the weekend off to spend time with my wife. I still play hockey, ski, skate and will continue to do so as long as I can. Playing hockey allows me to take my mind off my situation and focus on stopping the puck (I'm a goalie) - and the beers afterwards helps as well. I do take a nap in the afternoon at times, especially if I will be playing hockey that night, to restore some energy.

Need to find a routine that works best for you and stick with it.

All the best!

in reply toZee5

Sounds like my situation. Keep trucking. It helps the mind as well.

Survivor1965 profile image
Survivor1965

I’ve been on Lupron and Xtandi for a few year. My onc told me the fatigue is from both the Xtandi and Lupron equally.

I hate it but happy they are working.

elvismlv123 profile image
elvismlv123

yes it is...but you can still function ok. I had a full time job and had to walk a lot.

I conducted my normal routine in a normal manner. I did this for 18 months back in 2004-2005. Its not like you fall asleep or pass out. Its a bit of a hold back...thats all.

Hawk99 profile image
Hawk99

Fatigue from Lupron is the dirty little secret of ADT that physicians don't warn you about. In my husband's case he had Lupron before and after 42 radiation treatments, his testosterone went to zero, and he was so weak that he would sometimes fall asleep with his fork in his hand and food in his mouth. Yes, this kept the PCa in check for 7 years but the QoL was impacted greatly. He was too weak to exercise. When he had a CRPC recurrence he had another Lupron shot, then Casodex, then Xtandi, then Zytiga, and by the time he passed away 3 months later he was too weak to get out of bed. I hope and pray some of the new treatments can get around the ghastly side effects of Lupron and come up with a new paradigm of care. Sending you all best wishes in making your treatment decisions.

in reply toHawk99

Condolences for your husband. I’m Sorry that any of us go thru this..

DrWrite profile image
DrWrite

I didn't experience much fatigue with Lupron. Bu then, when you're "in the program" it's hard to tell what causes what. Good luck!

Ooohhh yaaahhh!

Boywonder56 profile image
Boywonder56

Just my two cents if you get on Lupron or when you're diagnosed workout because if you wait and the Lupron really takes hold a lot harder to do and I'm sure everybody said that in so many words but I want to interject this I'm not one who sat at a desk all my life I work construction and I was surprised but not really to see on the bone scans that I made up with arthritis better than bone Mets I've only got a couple but I must say the Lupron is exacerbated arthritis to the point that even doing push ups and such and it working 6 7 hours a day I wake up crying at night cuz my shoulders hurt so bad anyways it's either the Cure or the cancer both of them were going to kill you

larry_dammit profile image
larry_dammit

Yes, and man booby, hot flashes, muscle loss,man hair loss, sex drive loss lots of things. 😡. But it does work at lowering the PSA. Fight the monster

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