32 replies to this topic

[lala]

Hi,   why does gleevec make us so tired?  even when we are in remission?  i only work 3 hours a day, and i am pooped!!!!   thanks!  ~Lala

[Trey]

There are a number of possibilities, and it is not the same for everyone.

1) Partially due to CML effects on the body (hyper-metabolism of cells)

2) Borderline anemia (low RBC, low HGB, low HCT, or even low-normal for these)

3) Drug interference with metabolites, enzymes, hormones, etc (not all well understood)

4) Women in general appear to have more problems with this than men from what I have noted, but it is an issue for most people to some degree or another.

Generally this seems to be more of an issue during the first year.  After that, things may improve, but not all find that to be the case.  One thing is for certain, it is not all in the mind.  It is something real.

Possible solutions (or partial ones) may be switching drugs, splitting dosage (if Gleevec), lower dosage (if doing well by testing), more execise (hard to do, I realize).

[Stephenagy]

I too have tiredness and I work a full day every day.  My RBC is always borderline low.  I am grateful that I have few side effects, but what can I do to get my RBC up?  Any help would be appreciated.

Steve

[PhilB]

Number 4 is an interesting one.  I bet there are some different views on the reasons for it:

1. Men are just tougher ?
   
2. Women whinge more ?
   
3. Men are lazy sods who don't use much energy in the first place as they generally expext to be waited on hand and foot by their womenfolk?
   

Discuss.

[GerryL]

I'm voting for number 3 - just kidding.

Can I add another one to the list

5. Depression

[everonward]

I'm with number 3 - although joking aside once we are seen to be back to 'normal' i.e responding well to our TKIs  we - even if not expected to- take on all of our old roles - chief cook and bottle washer, child care and some of us work outside the house as well. This is tiring without CML issues so throw CML into the mix and exhaustion looms.

I'm not working at present and I feel a lot better for it. So when I do get a job the family had better watch out as more help will be required.

Marian

[CallMeLucky]

With regard to RBC - I have been fortunate to maintain normal RBC and HGB counts since dx, however, I am still fatigued on a daily basis.  I'm guessing if your RBC is down, that would certainly play into fatigue, but it appears there is a component to it that is not related to RBC as well.

[lala]

Hi,  I really am wondering what exactly GLEEVEC does to the entire body to cause the fatigue.......if I am in remission and have changed my life so it is as easy as possible, have no depression, what is happening inside my body to cause the fatigue.....is the blood causing the fatigue, even if the blood is all in the normal range, is Gleevec in my muscles and causing it?????  I am trying to understand....5 years ago this month I started this journey.......and I am grateful for my good labs.......just would love to be my old self again!!!!!  I am 54.........female........I am interested in Trey's hormone, enzyme idea..... my doc said I no longer have leukemia because of the wonderful drug, Gleevec, and I should feel fine...omgosh......not true.......WHAT IS GLEEVEC DOING TO US??  :-)    THANK YOU FOR ANY SPECIFIC INFO YOU HAVE!  ~LALA

[GerryL]

Hi lala,

I haven't been on Glivec that long, but for me I actually feel like I have more energy, but I was also suffering from anemia until the Hematologist picked it up and put me on iron tablets.

If it is the Gleevec causing the issue, and if you've had PCRU for a number of years, perhaps you can discuss with your specialist about reducing the dosage down to 300mg and see if that makes any difference.

[lala]

Thanks for responding.....what do you all know about decreasing from 400 to 300 Gleevec......I feel so lucky to be in full remission, I am afraid to change it----though, energy would sure be fun to have again!!!!!  Also, I noticed the time of postings.....how can CML patients be up on the computer at 2 a.m.  !!!!!!!!  I still go to bed around 9 or 10 every night!!!!!  :-)

[GerryL]

Trey's one of the people to talk to about 300mg.

As to time zones, there are a few of us who live on the other side of the world - it's a global village.

[Buzzm1]

Hi lala

In a way I guess that I am fortunate to be on Gleevec, while retired.

It allows me to take 3 hour naps frequently..

I no longer attempt to sleep at regular times, so more often than not,

I'm on the computer in the middle of the night.

My exhaustion seems to be worse at some times, more than others. 

At times it seems all I do is get up, only to go back to bed 3 hours later,

sleeping for 3 hours, and repeating this cycle, for days at a time.

But then there are strings of relatively good days, not so much in the form of rejuvenated energy,

but simply in the fact I'm able to stay awake all day.

Yet Another Gleevec side-effect

My mostly brown hair is falling out..I'm being stripped of one of last vestiges of youthful genes..lol

two years ago, I looked to be in my 40's; now, i look to be in my early 50's

never imagined a bald me; can't trade on my youthful good looks anymore

and I'll have to begin acting my age...DRAT

One benefit

I've tuned into C-SPAN's Washington Journal 7:00-10:00am EST  (4:00am my time)

and very involved in what is going on politically in our country, and elsewhere

and become a regular on Twitter, for the political news

and am developing a subjective geographical educational database

Life is good.

Buzz

[AliceJane]

That is a lot like my sleep pattern, cept' mine is not regular, sometimes I can stay awake and then next day I sleep 6 hrs and then wake for couple and then another 6 hr nap. Others awake for 4 or 5 or 6 then nap. No pattern at all that I can see.  But the one thing that is constant is how fast I get sleepy.

I can be watching TV and next thing I know I am waking up hours later or I can be at computer, all of sudden get really tired and have to lay down and poof, I am asleep.  It is weird.

Also the hair, I was losing it for a year before they found the CML, it slowed down and stopped on Gleevec then picked up a little on the Sprycel, 3 weeks on the Tasigna and it is worse than ever, coming out by the handfuls.  Also 6 yrs ago, very few greys, now I am not grey headed, almost completely white headed.  Weird. But at rate it is coming out now guess the color does not matter much.

Alice

[lala]

SSSSSSSOOOO.....are you sleepy or tired?  Some are reporting sleepy.....my body is tired.  After 3 hours of teaching, I can hardly walk to my car as the aches get me!  Last year, I taught until 1:30 every day and thought I was going to die!!!!!!   If I am not at school, I am at home resting my body----not sleeping.  This is why I want to know what GLEEVEC does to the entire body to cause the fatigue.

I also wonder why my extended family thought it was my turn to have Christmas Eve here......I did it....but I still marvel at them for thinking this.....I am pretty sure they don't understand how I (we) feel!!!!!  :-)

~Lala

[Trey]

There is not much data on decreasing TKI drug dosage, but the concept makes good sense to me.  If you need 400mg Gleevec when you have way too many white blood cells, then wouldn't you need less drug when you have far fewer cells?  Some have done well on low dosages of the TKI drugs, and a study in Japan showed some reaching PCRU while taking only 200mg per day.  But we all have different needs for drug dosage since some people can more efficiently use lower drug levels.  I would like to see some clinical trials done on decreased dosage (especially after PCRU), but there is not much incentive to do it for drug companies.  My personal opinion is that after continuous PCRU for two years, the Gleevec dosage could be reduced to 300mg or maybe even 200mg per day (and similar levels for other drugs) maybe with closer monitoring.

Also, the name Lala makes me tired, like la-la-la-dee-da-laaaaaa-laaaaaaaa zzzzzzzzzzzzzzzzzzzz.  Maybe Ooo-Lala would help perk you up?  Just sayin'

[AliceJane]

I never thought it was tired or sleepy.  I thought I was tired and sleepy. I guess I have excepted being tired all the time. And thought that on lots of days I went past tired to so exhausted I had to sleep a lot.  For instance I don't plan to do anything for 1 or 2 days after day of doing errands or going to Dr. or grocery shopping.  I have learned do something one day, rest the next.

Alice

[lala]

I LOVE YOU, ALICE!!!!!!  That is exactly how I used to feel.....it does get better!  I read your posting and thought OMGosh....she knows how I feel/felt!  It feels good to know someone understands!  Now, have Christmas for 20----yikes!!!!!  :-)  YOU made my day!  :-)       I do hope you feel better.  ~Lala    How long since diagnosis for you?????? Me, 5 years.....

[Buzzm1]

you nailed it Alice.

have my necessary errand runs minimized to once every two weeks for that very reason

taking a shower and washing my hair, at the same time, brings me to total exhaustion

and I mean total...at times, it's either sit down, or fall down

thinking my blood pressure medication might be part of the equation

I spend an inordinate amount of time on the computer working on my stuff;

finding the need to close my eyes momentarily often results in falling asleep,

awaking only to go crawl in bed for another long nap.

anything at all the least bit physical, I do in 15 minute segments, with breaks in between

it is what it is

[AliceJane]

I was diagnosed in Sept 07,  on to Gleevec Oct 07, Sprycel Feb 09, Tasigna Dec 10.  And that is the path my roller coaster took.

[AliceJane]

LOL, I have learned if I need non-cancer friends to understand, I never say I get tired or even exhaustion.  I spell it out, If I go somewhere I need day or 2 to recover.  I sit to take shower, can't stand long enough to get everything clean.  I work 20 min. then rest hour for the next 20 min work spurt.

I allow for an hour to rest after I get ready before I leave the house. etc. This is one Alice who really did fall down the damn rabit hole.