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What is the cause of fatigue: CML or Gleevec or ... ?


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#1 cousineg

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Posted 07 July 2011 - 12:59 AM

According to my doctor, my fatigue is not connected to Gleevec because I was very tired before taking Gleevec.

A year before June 2003 (When I started atrial fibrillation), I was very tired. At August 2004, my platelets and my white cells started to increase.

I started taking Gleevec (400mg) in June 2005.  I also have a diagnosis of sleep apnea.

Links: Nuvigil in Treatment of Cancer-Related Fatigue in Chronic Myeloid Leukemia Patients
          May 2011, Clinical Trial Feeds

         http://www.cmleukemia.com/fatigue.html



#2 hannibellemo

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Posted 07 July 2011 - 05:08 AM

Cousin,

Are you being treated for apnea with a c-pap (or other similar machine) or have you received a dx for apnea with no treatment? If the latter is true then my money is on the sleep apnea. It is the most treatable cause for fatigue so if you aren't being treated you might want to give it a try.

Pat


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"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#3 CallMeLucky

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Posted 07 July 2011 - 06:22 AM

Very interesting because my doctor said the exact opposite.  In my case however, I was not tired before dx.  I asked my doctor at last visit if my fatigue and other side effects were the drug or the CML and she responded that I had very few CML cells left in my body (CMR).  She said my issues with fatigue and muscles was 100% drug related.  I believe in most cases anyone who takes a drug holiday, their fatigue lifts.  I find it very odd your doctor believes your fatigue is not drug related.


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%
 

 


#4 janner25

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Posted 07 July 2011 - 10:11 AM

Not sure if tasigna is different than gleevec in terms of fatigue..but what's interesting is that at each appointment, I mentioned to my onc about fatigue and he said it has nothing to do with the meds or cml...just my 'life'.  I said I didn't feel this way until I started the meds - well started about a month before - hindsight - symptom of CML perhaps.

The onc then thought about it for a while and then admitted that I was his youngest patient.  The rest of his patients were in their 50s and 60s - so maybe, just maybe, it could be related to the meds.  He said since I work (albeit part time - 8-2 everyday), have 2 young boys, try to keep house, etc., that I don't have the luxury of resting when I need it unlike his other patients.  THAT made me feel 100% better.

Some days are better than others - and some days I feel fine.  But on those days I do EVERYTHING - which sometimes hurts me in the long run - but its worth it!

Janner



#5 Guest_billronm_*

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Posted 07 July 2011 - 12:38 PM

Hi Cousin,

       Boy I wish these doctors and pharmacists would get their stories straight. They're going to drive us nuts. About 6 weeks ago I went to my psychiatrist for a med check. I told him about my fatigue and he gave me a script for Nuvagil. He knows all the meds I take. The script was for only 10 days, and if it helped he would call my pharmacy for a full script. The Pharmacist said it was okay. But I really hate taking pills like that. So I called my onc and he said absolutely not, Nuvagil would decrease the amount of Sprycel in my system. I always make sure I ask Onc about any new med he would know the most about it. I have 2 other specialists I see for another problem and when I told them I was switched to Sprycel, They didn't even know what it was.

That's just my 2 cents but I won't take anything even a vitamin without checking with Onc.                 Simcerely Billie



#6 lala

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Posted 07 July 2011 - 08:07 PM

Hi...I think I was tired for two years before my diagnosis.  Every night, at nine, my son had to help me up to bed cuz I felt like I was going to pass out...literally.  We found out my platelets were 1.2 million......that was our first sign of cml.  I wonder what that high count does to the body.  My onc said all her patients are tired.  My big cancer unit doc led me to believe I was the only tired one!!!!  I had to set him straight after checking in with all of you!    Sooooo, I agree, once the blood is good, it is the stinking medicine!!!!!! Lala



#7 hannibellemo

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Posted 10 July 2011 - 09:40 AM

I'm sticking with my suggestion of treatment for the sleep apnea. If you hadn't said you were tired way before dx it might be different. I attended a transit conference where we had a training on driver fatigue. I couldn't figure out why fatigue might be an issue for non over the road drivers. Wow, were my eyes opened! Fatigue, caused by sleep apnea, has been shown to be a huge factor in work related injuries.

If you aren't being treated with C-pap or similar give it a try and see if it makes a difference - at least it is something you can do unlike trying to affect fatigue caused by our TKIs - much more difficult.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>





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