I wonder if I am the only cancer guy ... - Advanced Prostate...

Advanced Prostate Cancer

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I wonder if I am the only cancer guy with this exhaustion

sidnw profile image
36 Replies

exhaustion! I know many of you say you are tired....I now started on Xtandi..just 1 to start , but once again (I sound like a recording..saying this over and over...but I know this exhaustion is not normal...ever since my Provenge trtmt. Saw my internist yest. he says very little on that subject..My onc says it's the cancer.....Hoping my appetite will increase soon..Shyrlen made me a health drink today...strawberries, blueberries, Greek Yogurt..ice cream and protein powder. She will not let me thk. anythg. but good thgs.(Unfortunately that doesn't really work.

Dan, is this where you said I shd. comment???

Sidnw

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sidnw
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36 Replies

Most people in ADT and/or chemo have significant fatigue.

I am on ADT and I feel tired all the time, sometimes very very tired. People ask me, what do you fell? and I say like I have a ton of bricks on my shoulders. Napping helps some but not too much.

Sorry to hear you are in this situation. I do not have an answer in how to improve it. They say that if one can overcome tha fatigue and do some exercise , just walking it helps, that is my plan when I can overcome my fatigue.

Best wishes

Raul

BrianF505 profile image
BrianF505 in reply to

Ton of bricks! Good one. I say it’s like carrying an 800 lbs lowland gorilla on my back.

Tho, I know it’s not easy, but exercise helps and I also take an herbal remedy called Si Jun Zi Tang. The one I buy is the 4 Gentlemen Formula from TCM Zone. Mix a packet with 6 oz hot water 3 times a day. It’s helped reduce the 800 lbs gorilla down to an orangutan.

JamesAtlanta profile image
JamesAtlanta

Exercise helps a lot. When I was going through chemo I literally forced myself to walk 3 miles a day. I did not want to, but knew it would help. The days I exercised I felt much better than the days I didn’t.

I’m on ADT, Zytiga and prednisone now and feel very fatigued. I push myself to ride my Pelaton bike at least 30-45 minutes per day now - really helps with muscle mass and energy.

Wish I had other ideas, but it seems to help a lot of men here. Hope it helps you, too!

Best of luck on your journey! We are pulling for you!

James

sidnw profile image
sidnw in reply toJamesAtlanta

I thank you James....I unfortunately do not do that type of exerise now...Happy if I walk around the house 2 or 3 times.....Appreciate your advice....

Sidnw

BigM62 profile image
BigM62 in reply toJamesAtlanta

Three cheers for peleton. I bought one for my wife 2 years ago and never thought id use it. But running is out (doc orders) and even walking 45 minutes brings back pain. So peleton it is. Switched seat out to a spongy wonder.

JamesAtlanta profile image
JamesAtlanta in reply toBigM62

I could barely ride it when we got it. Was lucky to ride 10 minutes. And had to get a seat cushion, too. Now I can ride it for an hour and it’s fun. 😊

Certainly burns a lot of calories off and helps keep the weight down, doesn’t it!

Have a great day!

James

in reply toJamesAtlanta

Sounds like you picked yourself off of the bottom. Good job! I remember when I could hardly get up physically. I got an elliptical , start with ten then the arobic benifit began We must pump with adt threatening our cardio vascular. Starting is hardest.

MelaniePaul profile image
MelaniePaul in reply toJamesAtlanta

Hi James.

We thought this about exercise too, but I was often afraid that it would be too much on Paul's body having to take all this treatment and then exercising as well. It is so hard to know what to do, isn't it?

Mel.

JamesAtlanta profile image
JamesAtlanta in reply toMelaniePaul

Yes it is hard to know, Mel! :)

But it makes the world of difference, doesn’t it?!

Have a great day!

James

DSEE profile image
DSEE in reply toJamesAtlanta

Can you please tell me?

What stage were you diagnosed?

Do you have bone Mets?

I admire your enthusiasm and commitment to exercise.

I sent what you posted to my husband who is on the same therapy.

Stage 4 with bone Mets.

JamesAtlanta profile image
JamesAtlanta in reply toDSEE

Hi DSEE,

You can see my entire history on my profile - just tap on my ‘Snoopy’ icon.

But short story is diagnosed in 2015 at age 53 with PSA 227 and bone met in my T8 vertebra of my spine. Stage 4, Gleason 8. Tremendous pain. Started Lupron immediately, radiation to my spine, early chemo, and recently added Zytiga. Doing great right now. PSA back to undetectable. And I’ve worked through it all ... which is why exercise has been so important so I can keep my energy level up.

I also developed a heart issue - I assume caused by the radiation. My heart rate will not go over 120 beats per minute. Makes strenuous exercise a bit challenging, but I just do the best I can. Still best 20% of my fellow Peloton cyclists. :)

Hope this helps!

James

I think it’s par for the course... all treatments can cause it.. Takes time to overcome these effects. The Onc blaming just cancer is simplistic. Sleep is so important, but chronic fatigue hit s me at times. It’s a catch 22 .at some point. You must exercise to break fatigue. Where to find the motivation??. A year ago I thought that I’d be in chronic fatigue syndrome for life.. I could shut down and stay in bed for days , I was also suffering some heavy depression and wouldn’t eat or drink.. It gets bad quickly .. By laying around for a year and a half due to my initial condition I experienced great loss of muscle strength and balance. I think you’re now experiencing and recovering from a complete attack on your system .. everything functions better when our body gets moving.. very hard for our body to repair without use. You need rest now , But don’t give into hopelessness and your strength should return . Maybe not 100% but much better than now.

AlanMeyer profile image
AlanMeyer

Hello sidnw and Raul.

From what I've read, unless your cancer is out of control, it's the ADT, not the cancer, that's causing fatigue. I think the prevailing theory is that lack of testosterone causes a loss of mitochondria - the organelles inside muscle and other cells that convert breakdown products of food intake into usable energy carriers in the cells (adenosine tri-phospate, ATP.) There are some experimental drugs that might, or might not help, but the only treatment for this that is known to work is exercise.

Don't wait until you feel strong enough or less tired to exercise. Start now. It is exercise that will make you feel stronger and enable you to do more exercise. Waiting and sleeping will just allow things to get worse.

What I recommend is as follows:

1. Pick an endurance exercise. Since you're severely tired, walking may be the best one.

2. Walk as long as you can the first day. Maybe it's only 10 minutes. That's okay. Do it and then do 11 or 12 or more minutes the next day. Do it every day. Keep building up the time and distance. You may find some days that you just can't do what you did the before. That can happen, but don't let it discourage you. Keep trying to increase the time. Ultimately you will build up to 2-3 miles a day and you will feel MUCH better than you feel now.

If you have an indoor way to do cardio exercise, that will work too. A treadmill, stationary bike, elliptical trainer, or whatever, will also work. I'm sure you can create a routine for walking, climbing up and down stairs, or doing other things on days with bad weather.

3. Get extra sleep. I found that about 9 hours a day was enough for me, that was about two hours more than I used to get before I started ADT.

You won't be able to do as much exercise as you could before ADT. I was running four miles on a treadmill three or so times per week before my ADT. On ADT, the best I could do was one mile at a slow jog. But I did it regularly and it was enough to make me feel fine. I couldn't do as much as I could before but I could hike 5 or 6 miles in the woods without a problem and work all day at my desk job (computer programming.)

There have been many men on this group who have testified that exercise works for them. I don't know anyone who said he exercised every day who didn't feel significant improvement. Laboratory studies have also demonstrated that this works and that it rebuilds mitochondria.

Best of luck.

Alan

sidnw profile image
sidnw in reply toAlanMeyer

Therapist here today.....(cute as can be) did not want to do too much today....

I walked back and forth our second floor (bi-level).

Sidnw

AlanMeyer profile image
AlanMeyer in reply tosidnw

That's good! It won't work right away, but I'm hoping that if you keep track of the amount of time and distance and keep increasing it, it will make a big difference. Since you've got two floors, I recommend some stair climbing too. Listen to lively music while you exercise if that will help.

Don't give up. Don't tell yourself - I'm tired today, I'll take the day off. Keep increasing. It takes time, but it really does work.

Alan

sidnw profile image
sidnw in reply toAlanMeyer

Lively music......used to love it......Shyrlene will keep it on all day if it helps me from this exhaustion....

Thanks Alan

Sid

AlanMyer, sage advice. “ Start now” thats the key , don’t wait for energy to magically appear. I feel that energy runs in cycles.. I have rushes of energy just like rushes of emotion..Kick start the motor again..

sidnw profile image
sidnw in reply to

am trying ..honestly..Did not sleep well last night. Hope tonight is better!

Sidnw

in reply tosidnw

I had some troubling family news. Been down sleep 18 hrs .. that’s too much.. when I’m depressed I powersleep . Not good either. I’m better now . I go through this once a month . Been there done that. Sat and slept no energy for months at a time during these past three years.. I’m curious about they that don’t get fatigue.. we need their secret.. you are going to feel better, you’ll figure it out and you are not alone in this..

erjlg3 profile image
erjlg3

You Are NOT the only one sidnw. Elgie's Doesn't go Away. He does what exercise he is able to do on a daily basis and he still is so very exhausted/ fatigued/ tired. Sometimes He Takes Excedrin Migraine So He Doesn't Fall To Sleep. The Caffeine In it sometimes helps a little. Makes Me bug eyed 😁though.

Best Wishes,

Jackie

Brightman profile image
Brightman

Exercise helps so much. Pace yourself and don’t overdo it. After completing radiation and then chemo almost 12 months ago as well as permanent ADT ( 6 monthly Eligard - have just had my 4 th injection) I was so fatigued that I did not want to do anything or go anywhere. My oncologist referred me to a 6 week rehabilitation program in July 2017 which included almost an hour in a pool, followed by the same in the gym for 3 days a week. I did not want to do it, but with a bit of pushing from my wife I persevered and gradually felt better about half way through and by the end felt stronger and fitter than I have been for years. Have followed up with my own program at home and am waiting to do another 6 week program soon. Do what you can gradually.

Cheers Brenton

Dan59 profile image
Dan59

Hi Sid, Glad you made the post, Lots of good advice here, I am glad you made the post. My only thought would be I wonder what the Oncologist thinks about taking a light steroid in low dose, But exercise is what is most commonly suggested. When I was on xtandi, I was tired so I slept a few extra hours meaning I went from 8 hrs to 10 hours still getting up every 2.5 hours.

Dan

in reply toDan59

2.5 me too..

sidnw profile image
sidnw in reply toDan59

Will see Oncol. in aweek or so.....Shyrlene beingwith me will see to it this subject not passed over...

Hope you're doing OK Dan.

Sid

Dan59 profile image
Dan59 in reply tosidnw

Sounds like that Shyrlene , Is great to have around, That smothie she made the other day sounded good. Thanks Gus, I am doing just fine. I am glad She will be at the Drs with you.

Dan

sidnw profile image
sidnw

Dan, I will TRY....Thanks dear friend....Shyrlene made me a very good health drink today and I actually drank it! I expect both the nurse and physical therapist tomorrow. I told my daughter who said she thinks steroid a good idea....

Sidnw

MelaniePaul profile image
MelaniePaul

Hi there.

My husband - who has been on anti-hormone treatment and on Chemotherapy - is tired all the time and napping doesn't help. If Paul does too much with too little time to sit down and recover, he will get sick. It has been like this now for a long, long time. We think it is both the cancer but also the treatments he has been on.

Mel.

in reply toMelaniePaul

All of the above, I’m the same way.

rococo profile image
rococo

I think some of the fatigue has to to do with the nocebo effect? Anuhow I take co q 10 and american ginsing to get a a placebo effect. Anyone who works out knowes about pushing themselves for increasing effects, most important for those that never did need to to learn this. Can be applied at any level of fitness. Wishing the best to all. Rocco

Litlerny profile image
Litlerny

One word...GOLF🏌️⛳️.

OK...seriously, the point is to do whatever works for you, preferably something you enjoy and look forward to, but do something, and stick with it. I golf 2-3 times a week. And the way I golf involves a LOT of walking. I also hit balls on the driving range once or twice a week. But, I’m out there in the sunshine having a good time with my best friends, and getting more exercise than anyone other than a PGA caddie. So it helps me on multiple physical and emotional levels. Best of all, my wife is very supportive of it. I also walk my dog 4-5 times a day. I sleep about an extra hour per day. To some extent, your body will tell you your limits. Try to push them as much as you can, but accept your “new reality.” I used to run 10K’s. That just ain’t gonna happen anymore, but I still do as much as I am able. Exercise is one of the weapons we have to fight the cancer beast and the potentially debilitating effects of the drugs we take to control it.

For me, the fatigue and muscle weakness started when I started my ADT nearly 3 years ago.

Best wishes to you in finding what works for you. 😎

auroracham profile image
auroracham

My MO tells me it is both the cancer and the meds. I also experience extreme fatigue and tell the doctor about it each time that I am there. Makes it hard for me to continue work. You are not the only one.

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

j-o-h-n <===<<< Does not exercise. But breaks butt being a house husband.

Good Luck and Good Health.

j-o-h-n Monday 02/12/2018 2:07 PM EST

ARIES29 profile image
ARIES29

Hello sidnw,fatigue yes & it is good to hear that others have this problem also,i thought i was on my own,napping all day,weight gain, etc.

Exercise is the only answer for it,make the trip to the gym!!

Good luck

JoelT profile image
JoelT

Hi Sid,

Exhaustion is a very common side effect of Xtandi. Say hello to Shyrlen for meand hope to connect with the two of you on our next telephone support group on Thursday the 22 nd of February

Joel

sidnw profile image
sidnw

Hi Joel,

I actually feel that tiredness isn't the corrrect word...it's more like complete exhaustion.

Oncol. started me on 1 and will increase to 4 a day. What then Joel???

Sidnw (Shyrlene---I am making him a very healthy milk shake(?) with strawberries, blueberries, ice cream, a choc. powder with lots of protein, and milk.) , but hasn't helped yet!!

Reptale profile image
Reptale

I think most Pca therapies and meds include tiredness as one of their side effects, not to mention the cancer itself which does take its toll, too. For the last three years since I began treatment, I’ve wanted most to veg out. Did that for awhile, then my cardiologist took me to task and I started walking for exercise. Now can manage 3 miles at a brisk pace and do that 5 Times a week. Don’t know if it has helped my heart, but I definitely have more energy now. I know exercise is the last thing you want now, but try it. It may help.

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