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#1 Taylor

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Posted 01 December 2011 - 10:29 AM

So, am I the only one who finds it extremely difficult to get up and around?  My (new) wife thinks I am just extremely lazy, but physically and mentally it just seems like my sleep wasn't good or something and I all around find it hard to get around.  Is it by chance the TKIs or am I really just lazy?



#2 CallMeLucky

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Posted 01 December 2011 - 10:48 AM

I've commented in the past that I often wake up as tired as when I went to sleep.  Getting out of bed is an experience I would have expected when I was an old man.  I ache when I get up.  Once I get moving, it can get better, but the fatigue has been very heavy for me and I am considering switching off of Gleevec because of it.  So no I don't think you are lazy.  I also find many mornings that while overall Gleevec hasn't been too bad on my stomach, I wake up with gas pockets in my belly that are extremely painful.  Again, once I get moving around it goes away.  This is probably because I take my pill right before I go to bed.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 Guest__*

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Posted 01 December 2011 - 10:49 AM

I have found the same thing if I have done a lot of physical activity the day before, my whole body just feels exhausted.  I am lucky enough that I can rest in the pm if I have been doing too much and that has helped but I'm guessing you don't have that option.  We all just have to learn to pace ourselves and listen tto our bodies.



#4 KerriD

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Posted 01 December 2011 - 10:51 AM

I am on Tasigna and I find that when I wake up it takes me few minutes to get my bearings....as in... where am I, what day is it....etc.  Things that used to be in the front of my thoughts seem like they take effort to find....does that make sense?



#5 Guest_billronm_*

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Posted 01 December 2011 - 03:25 PM

Dear Taylor,

No matter how much sleep I get I have a terrible time getting up in the morning, I usually just sit at the table for an hour drinking coffee before I can even start moving around. So tell her it's par for the course when dealing with cml meds.    good luck Billie






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