27 replies to this topic

[JPD]

Im soooo damn tired in the middle of the day.  47y/o male, decent diet.  Zero exercise.  Just cant manage it.  Sooooooooo tired through the middle of the day especially.  I cant tell if its the meds that are keeping me from exercising or if Im just a middle aged man who needs to exercise and that would give me more energy.  I likely know the answer to this (or what responses Ill get) but thought Id throw it out there anyway.

 

Its just so terribly depressing not having any energy.  I am too young to feel this shitty.  #sadface

[tiredblood]

I feel the same JPD. I have to really push myself to stay up at night, going to bed earlier than I used to. Just as tired on 1/2 the dose.

[Floa7]

You guys had your Thyroid checked? I get mine checked every 6 months while on Tasigna.  But I am not tired, the more I do the more I have to find to do, just a bit hyper here. And I will be 66 next month.

[Trey]

A sentiment aptly expressed by that great philosopher Garth Brooks (with a little help from Chris LeDoux):

https://www.youtube.com/watch?v=n2qypaUPvPs

https://www.youtube.com/watch?v=OF-pyWeMLZs

Edited by Trey, 16 September 2016 - 07:32 PM.

[pammartin]

Garth & Chris LeDoux?  Now that is a way to start the day.

[snowbear]

A sentiment aptly expressed by that great philosopher Garth Brooks (with a little help from Chris LaDoux):

https://www.youtube.com/watch?v=n2qypaUPvPs

https://www.youtube.com/watch?v=OF-pyWeMLZs

The theme song of my life, lol

[kat73]

JPD - I couldn't agree more.  I can't understand why fatigue went unaddressed by the European LeukemiaNet summary of adverse effects/events (that Trey provided in another thread).  Although I read about it often here, and my onc agrees that he hears it a lot from his CML patients, it still gets the run-around from everybody in the medical/scientific community.  "Exercise - you'll get energy."  First of all, that's like saying, "Oh, you're blind? What you need to do is see."  Would if I could!  But can't.  Secondly, I've tried it and it's wrong.  I feel worse and even more tired.  Keeping at it doesn't help.  No progress is seen.  A flight of stairs at Day 20 feels just like a flight of stairs at Day 0.  "Get more rest."  Feels good, but doesn't make any difference.  "Pace yourself."  That means:  don't do anything you did in your former life - become a rutabaga - take up jigsaw puzzles and daytime TV.  "It could be depression."  Wow - ya think?  It's kind of a vicious circle, though, isn't it?

 

My onc has told me more than once (and I think he feels he is reassuring me somehow) that the fatigue is due to the TKI and not the CML.  Okay, I say, nodding my head.  So?  What do I do?  What do I do to get rid of it?  What's a treatment?  And, as long as I'm ranting, why is nobody studying this? 

[jmoorhou]

You're lazy, start exercising.

[tiredblood]

You guys had your Thyroid checked? I get mine checked every 6 months while on Tasigna. But I am not tired, the more I do the more I have to find to do, just a bit hyper here. And I will be 66 next month.

Yes, and so far it has been within normal limits.

[Trey]

JPD is lazy, but it is within normal limits.

[JPD]

You're lazy, start exercising.

Daaaaaamn.  Tough love 

[Gail's]

I'm with ya jpd. A little harsh to say just plain lazy. Although sleeping doesn't always help, my afternoon naps are helpful if I want to stay awake past 8 pm. And yes, exercise does make me more tired. But I have to get out and walk to blow away depression, even if it's just around the block.

[jmoorhou]

I had and have what JPD is talking about and I know exercising helped with me. The rowing machine is fun and easy and hits most of the muscles. Swimming is also good. Join a gym. I had paralytic polio when I was a kid and have a bad leg, if I can force myself to exercise so can you! Tough love, yes.

[IGotCML]

JPD - it is the meds that make you soooo tired during the day. I am also 47 y/o male and my energy level is materially less than before CML. I am exercising as much as I can without wiping myself out and it does give me extra energy, however it does not eliminate the tiredness that comes with the TKI.

 

I do encourage you to have a consistent daily or weekly exercise program, it will make you feel better.

[PhilB]

Hi JPD.  There is an ENORMOUS difference between dealing with fatigue when you're a couch potato, and dealing with fatigue when you're as fit as a butcher's dog.  I took up cycling as my main means of local transport and it was damn hard at first, but now I'm fitter than I've been in decades and as a result the TKI fatigue is just a mild irritant to be pushed on through rather than something which used to seriously impact my quality of life.

Maybe Janis could drop by and be your personal trainer?

[SunNsand]

Im soooo damn tired in the middle of the day. 47y/o male, decent diet. Zero exercise. Just cant manage it. Sooooooooo tired through the middle of the day especially. I cant tell if its the meds that are keeping me from exercising or if Im just a middle aged man who needs to exercise and that would give me more energy. I likely know the answer to this (or what responses Ill get) but thought Id throw it out there anyway.

Its just so terribly depressing not having any energy. I am too young to feel this shitty. #sadface

I get it, I'm 58 and I'm too young to feel this shitty too. Earlier this year I made up my mind I was going to walk outside on a regular schedule. I love being outdoors but found walking alone was kinda boring. My son suggested I try listening to podcasts with earbuds while I walk, I did and I love it! I listen to true storytelling and I'm hooked. I can be seen walking and laughing at the voices in my ears Ha! You can find anything you're interested in on podcasts. It's not always easy to get out and move, but when I'm finished I feel so much better mentally. Scometimes I'm in worse pain, but mentally it really gives me a boost. On days I can't find the energy to get out the door, I think about how I feel after the walk and that is the carrot I'm chasing!

[beno]

I have found mental exercise more taxing to me than physical exercise.  After my initial anemia, I've been able to work myself back up to walking 5 miles per day and lifting weights or playing tennis twice a week, but if I'm reading something technical or analyzing data, I get totally wiped out and need a nap after a few hours.  I feel like I'm too broke to pay attention any more.

[Marnie]

Hey, JPD. . .

 

What dosage are you on?  Any chance that you can reduce?  For me, the difference between 50 mg Sprycel and 25 (I'm now cutting my pills in half with doc's blessing) is interesting.  50 mg gives me lumpy head (annoying rash), elbow joint pain, fatigue.  25 mg = no lumpy head, no joint pain. 

 

I'm always tired, darn it.  I push through the fatigue because I can't stand not being active (new sport. . .stand-up paddle boards on the river, what a hoot. . .hopefully not as dangerous as trials motorcycles). 

 

Don't call yourself lazy, the TKIs definitely have an impact on fatigue.  But try to get out there and do something.  Try a paddle board.  It's always entertaining when someone falls in. . . especially my husband. 

 

Marnie

[tiredblood]

I'm tired all the time, but remain active. But every evening it is like my energy switch suddenly cuts completely off. I push through it too,Marnie.

[JPD]

Hey, JPD. . .

 

What dosage are you on?  Any chance that you can reduce?  For me, the difference between 50 mg Sprycel and 25 (I'm now cutting my pills in half with doc's blessing) is interesting.  50 mg gives me lumpy head (annoying rash), elbow joint pain, fatigue.  25 mg = no lumpy head, no joint pain. 

 

I'm always tired, darn it.  I push through the fatigue because I can't stand not being active (new sport. . .stand-up paddle boards on the river, what a hoot. . .hopefully not as dangerous as trials motorcycles). 

 

Don't call yourself lazy, the TKIs definitely have an impact on fatigue.  But try to get out there and do something.  Try a paddle board.  It's always entertaining when someone falls in. . . especially my husband. 

 

Marnie

Thanks Marnie.  Sadly, no.  Im taking 400mg dosage & still not having an optimal response.  I am recovering from a broken leg, but Im gonna give getting in GOOD shape one more shot.