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sleepiness with CML/TKI

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#1 tiredblood


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Posted 30 August 2016 - 07:54 PM

It is getting to where I'm increasingly sleepy every day. This has been going on for a few months. Anybody else have this problem?

#2 RayT


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Posted 30 August 2016 - 08:09 PM

I've been on Gleevec (imatinib) 400mg/day for almost 3 years now. The chronic fatigue sucks and is so unpredictable. There are occasional days where I feel good for 16 hours straight after only 6-8 hours sleep, other days where I can barely make it 8 hours after sleeping for 14. Some days I'm doing fine until about 3pm then feel like I hit a brick wall doing 90mph. It's frustrating and I haven't been able to determine a rhyme or reason to this. The only reason I stick with the Gleevec is I bounce between PCRU and 0.07 (Aka "It's working.") From what I know, there's no way to predict whether the other TKIs would be better or worse, so I'll stick with the 1 that works and deal with the side effects. (I have a 12yo daughter that I have to live long enough to make her life miserable.) ๐Ÿ˜Ž

#3 kat73


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Posted 31 August 2016 - 02:26 PM

Ditto for both your experiences here, except I'm on Sprycel.  My theory is the constant turmoil and battle going on between cells and the TKI is the cause of the fatigue.

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

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