32 replies to this topic

[cousineg]

You can obtain information about fatigue at http://www.cmleukemia.com/fatigue.html

[SunNsand]

Here are my sleepy/tired friends! Boy can I relate! When I read through all these posts I had my hubby read through them. After he would read a post, he would turn to me and ask, "did you write that one?", he would read another and ask me the same question again. I have no regular sleep schedule either. It's sleep when I need to and I live my life around that, GI issues and pain. I can sympathize with lala about hosting Christmas Eve. I host every Thanksgiving and Christmas. The day after Christmas, I started throwing up and I've not been well since. Two days ago I went to a High School basketball game and started "internally freaking out". I don't know how to describe it, but I had to leave the game. Where did my life go? What happened? Oh and btw, I am on the 300 mg.

Happy napping,

SunNsand

[azteri]

I've been on Gleevec about 21 months and am in remission but wonder why I don't feel like it. Lately,  feel like I've been run over by a truck over and over again. I go through periods when I feel okay for few weeks and then I don't for awhile and of course I blame that on my CML and the treatment. I still teach 6th grade full time and am obliterated by Friday of a full week. Last week I worked 3 days--took a day off due to the exhaustion I didn't recover from over the day weekend.

Yesterday I was busy but not out straight--just my writer's group, lunch and minor grocery shopping with Mom. Felt pretty good. No today--slept to noon, stared at my computer unable to think long enough to write or work, took a snooze in the sun, then took another nap. I fell like I'm slogging through mental and physical fog that has the consistency of peanut butter. Thinking about taking tomorrow off, too.

I hate it.

Thanks for letting me whine.

[Trey]

Maybe instead of BIFs (Best Imaginary Friends) we are more like BISFs (Best Imaginary Sleepy Friends).......zzzzzzzzzzzzzz......Maybe we just get online together so we can all be sleepy together.  Is that wrong????  I mean, is being "sleepy together" something untoward?  It is like a morality play where Phil is wearing his feather hat (being sleepy together with a feather???) and then he pretends he is Hamlet the Prince of Insufficient Light, and he and Hannibellemo are "getting together" on a supposed "meet-up" this Spring in London Town, like we can't all see through that.  A poor innocent girl from Iowa in London. And then there is that talk of Gogi Berries....But where was I before I became so tired that I just....ZZZZZZZZZZZZZ....zzzzzzzzzzzz.......Hamlet.....I knew him somewhat OK, but not so well that.....definitely not feathers....zzzzzzzzzz

[lala]

Hi, AZTERI.  WOW!  I am so impressed that you have continued teaching all this time.  I mean it!  I was really sick 5 years ago this month----and I had to take a medical leave until the fall.  I spent more than 6 months on the couch or in my bed......like a truck had hit me. I remember getting up only when I heard my high school son entering the house.  I would get up for 2 hours and try to act like his mom :-) so he would feel better about our new normal. (Dad was at work and the other 2 kids away at school.)  He and I ate bagels every night because that was the best I could do...... AND I PUT ON LOTS OF POUNDS!!!  When I returned in the fall, I was so lucky.  My wonderful principal in my wonderful district scheduled me to work only a few hours a day.  After the 3 hours, I was back in bed until the next day.....no life outside of school.  Last year, I had to work until 1:30 every day, and it almost killed me....there were days that I wasn't sure if I would be able to walk to my car.  Luckily, this year I am teaching 3 hours a day, and that is plenty!!!!  Many weekends are spent resting up for Monday!  I rarely leave the house so imagine my surprise when my oncologist told me I should be able to do everything I used to be able to do!!!!!  I will see him this Tuesday, and I plan on talking to him about this.  I don't think he knows how it feels to take Gleevec --  I wish I could be my old self!  They used to call me PERKY!  :-)  As you know, teaching takes sssooo much energy.  I love love love teaching so I use all my energy at school.  Then, I come back home and rest.  I do feel better when I don't work-----but I don't want to give it up.  I can't imagine teaching all day EVERY DAY!!!  omgosh.... I know I could never ever do that!!!!  I am 54...how about you?

My husband has the insurance......I am so grateful for that.  I will be interested in reading the other posts regarding you not having it if you leave your job.  That is a huge concern. My friend also has CML, and last week her insurance denied her purchase of Gleevec as it now has become tooooo expensive.  I don't know what she will do----she is looking into other meds as G hasn't been working for her --- very scary----I know how lucky we are if G works for us.  I have really had to change my life.......and I am very grateful that I had options.  

After having Christmas Eve, I made a decision!!!  Since we all look pretty darn good, I think people forget we are sick/tired and should not have to do the things we used to do......sssoooo....I have decided to do the things I want to do, and say no to the things I don't want to do.  So there!!!!!  :-)

I can hear my mother up in heaven telling me that I have written way tooooo much!!!!!!  :-)  These posts make me feel so much better because everyone knows how it feels-----and it gets hard to always feel worn out!

I think if you make it through a week of work, that is it for you.  No going out at night or weekends....you just need to rest.  When I hit a very exhausted time, I have to remind myself that this happens and it will pass.  When it does happen, I start to think omgosh what is happening, and then I remember, oh,yea, this happens and it will pass.  Then I am grateful to be only exhaused every day and not very exhausted!!!!  :-)

I do want to thank everyone for all their info and feelings.  When I wrote for the first time in August after seeing my doc and being told I should be able to work FULL TIME, you all came to my rescue!!!  :-)  It does my heart good to know you all know what tired feels like.......I wish we didn't know......so thank you to everyone....it is time for bed......it is past nine!  Do you all have to go to bed early like I do??

THANKS AGAIN!

Laura (Lala)

[PhilB]

Okay, so who let Trey have sugar again?  Last time he ended up on his garage roof in his Star Trek outfit screaming ' Beam me up NOW! ' for nearly three hours before we could calm him down.

And sleeping with feathers is definitely not recommended - they can be very tickly on the Goji Berries.

Phil

[PhilB]

Being serious (for once) I do have something to recommend that has been helping me quite a bit since Xmas.  The distinction between sleepy and tired is a good one and what I have found is that taking exercise and being fitter makes a big difference to the 'tired' - although sadly it doesn't do a whole lot for the 'sleepy'.  I find now I'm a bit fitter I can get a lot more done during my 'awake' periods and don't need to rest so much afterwards.  I still need my afternoon naps and find getting through a day in the office without one very hard, but I am feeling a whole lot better in myself.  And what's brought about this change?  I got my wife a Wii Fit for Xmas.

As someone who was off work with depression for 6 months once in pre-CML days I have to say I really wish I'd had one of these bits of kit then.  At the time I spent hours every day sitting at a keyboard playing computer games and spiralling deeper and deeper into depression.  Playing on the Wii instead (and it is playing because it's great fun) leaves me fitter, slimmer and full of nice, happy-making endorphins.  And if I'm too tired to exercise myself I can always just laugh my socks off watching my wife trying to fly like a chicken!

[9miler]

Your oncologist should be able to tell you why you are feeling so tired. For one thing, the Gleevec itself working in your body to repair blood cells burns a lot of your energy. The end result of Gleevec often is low white blood cell counts and low hemoglobin, which can leave you with anemia-related fatigue. You could also have low iron in your blood. You need to kn ow which it is before you can try to treat it though. I tried working for 4 years and finally had to give it up.  It wasbn't just the fatigue, but fatigue-related depression as well. I hope you get your issues sorted out soon. Best of luck to you!

9MILER

[Lizzybee]

It's not just gleevec. I'm on Tasigna, and I only have about 3-4 good hours a day most days. My onc says it's a known side effect of the Tasigna. I feel better than pre-diagnosis (my hgb was 7.1 at diagnosis), but not back to normal. I am tired, not sleepy. Most days, even if I lie down, I can't fall asleep, but resting still seems to help, even if I don't actually sleep. If I have brain fog with the tiredness, it makes for a rough day and it's almost impossible for me to work since my job requires a lot of mental concentration. Fortunately, my employer is letting me set my own hours based on how I feel from day to day. I am struggling to work 25 hours/week.  It's so frustrating.

[AliceJane]

Wow, this notice came in email, perfect timing.  let me tell what happened to me.

So I am complaining, lol, ok, whinning about being tired. Friend talks to onc friend and get this advice for me. eat more protein, drink lots of water and exercise when she can.

so I,

go on diet eating mostly protein, well only protein, drink gallons of water. go to park and walk sunday, spend sunday with grndkids, get up Mond, get protein only at grocery, park at end of grocery parking lot, not handicapped. come out lugging bags in both hands, use cart? nope walk all way to end of line, come home cook up protein, drink til I slosh, Tuesday, eat protein, drink gallons of water, walk, walk,

Wdnesday, crash. Thur, crash Today come back to world of living, I have not been awake for over 3 hours since Wed.

protein, water and walking was going to be majic bullet. lol, bullet backfired and put me down for 3 days.

what I think;

I have to give in, accept new world of mine. I am never going to be the old me again. EVER. I have to learn to accept living tired, needing more sleep, not being normal. That is hard part. I want to be well again, I want my life back like it was.

oh, and for record,

I have been on all three meds and Tasigna is worst for the tired and I sleep way more on Tasigna..

I need rest. I need sleep. I have to live with that. I am not amused with leukemia or the meds for it.

and yes, this is me having temper tantrum on way to accepting my new world.

accepting is pain in my ass.

[Happycat]

This was a timely to see this bumped to the top of thread on Friday, especially when I announced to my boss at 2:30 pm that day that I was using my "I have leukemia - get out of jail free" card to go home and rest.

If the fatigue is not related to anemia, I figure it must have something to do with TKIs hitting other unknown receptors, or setting off some other intercellular signaling events.  There are lots of receptors in the body, and probably more unknown than known at the moment.  There are also lots of complex signaling events that occur, of which we probably only know the tip of the iceberg.

When it comes to side effects, if it is tolerable, there's really no incentive to investigate it.  It might drive patients nuts, but if it won't kill them and there's no real money to be made off of investigating, why bother?  (Sorry to say, there are business decisions at play, too.)

Traci

[Susan61]

Hi Traci:  Hope Lala posts to let us know how she feels now.  That original post was from January of 2011, but I can say that I am tired all the time.  It never goes away.  Some days are worse than others.  I have learned to live with it, and I work around it.  Along with all the other side effects I get that have never left me.  I got tired of trying to figure out why I am so tired.  I just count the years that I am still Living With CML, and Thank God everyday.  My 13th year is coming up in December, and I celebrate Dec. 12th every year since my diagnosis.

      I know its hard on those who are still working a hectic job, and trying to maintain their lifestyle and raise small children.  My case is different, as I was not diagnosed till I was 50.  Just try to think of where you are now, and not where you used to be. The postive thinking has helped me a lot.  I pray for everyone each day.

Susan