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CML symptoms seem to be returning while on gleevec

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#1 Mschmidli



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Posted 20 September 2013 - 07:09 AM


New to this board. Was diagnosed in April 2013. Just turned 40 in the same month. Started Gleevec 400mg April 19, 2013. I was 85.9% IS at diagnosis with WBC around 41k. Last blood result from blood taken mid July was 2.24% IS. My next bloodwork will be in Oct as my dr has me on 3 month visits now. Prior to dx, I was having night sweats (not severe, just damp in the back of the head), rash on upper abdomen that came and went, and pretty extrame fatigue (the one that makes you feel kind of flu like). The past couple of days I have notice this fatigue come back, not to the point I cant do my daily activites, but if I could lay down all day I would. Also last night I had a night sweat that soaked my hair tshirt and pillow. Should I be concerned? Another thing is that my menstrual cycle seems to have stopped. I am almost a month late. Just wondering if its ok to wait another month for bloodwork or if we are expected to have some of these days while on these meds. Thanks!

#2 Trey


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Posted 20 September 2013 - 10:03 AM

Many (maybe most of us) have the fatigue and other issues you mention, but they are now caused by the TKI drug itself.  You cannot "feel" CML re-gaining momentum.  So these issues are just part of what we all deal with, especially during the first year or so after starting TKI drugs.

#3 August1


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Posted 20 September 2013 - 10:19 AM


I am fairly new to this forum as well having been diagnosed just over a year ago. From my experience I can certainly say that I have noticed symptoms come and go over this first year. This includes fatigue, headaches, night sweats, and feeling generally run down. Overall, it's gotten much more manageable, but during the first three months I found myself taking naps (which I'd never done before) and also had a lot of joint pain which later completely disappeared.

I would offer that I think your PCR results look really good. The PCR test is your "gold standard" to how you are responding to the Gleevac. Others here can comment but I think you've already had a major cytogenetic response at 3 months (Ph+ < 35%) which shows great progress. I think as long as you continue to see this trend your CML is under control and you may be feeling side effects of the medication. I can't speak to all of your symptoms, but there's no harm in checking in with your Oncologist and letting them know what's up to be sure.

Keep in mind that there are also several other very effective TKI drugs out there (Sprycel for example). If Gleevac side effects get to be too much there should be no reason not to consult with your Oncologist to potentially make a switch.


#4 Mschmidli



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Posted 20 September 2013 - 12:41 PM

Thanks for your replies Trey and Bill. I guess it just scared me that these symptoms came back so suddenly after being gone for a few months. I will mention it when I go back next month. Hopefully they will pass like some of the other syumptoms I have had.

#5 Susan61


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Posted 20 September 2013 - 08:40 PM

HI:  ITs only a little over 4 months since you started Gleevec.  These side effects can go on forever, and sometimes you get a break from them.  I do not know how old you are, but I had gone through Menopause when diagnosed with CML.

My menstrual cycle just stopped.  I had one very bad month to the point that I was hemorrhaging, and then it just stopped.  If your still young,  then yours could be for a different reason.

    I have been on Gleevec since Oct. of 2000, and I still go through the fatigue and other symptoms.  I just find that they are not as bad as they were in the beginning.  We have had a lot of people who found the Gleevec was too hard to handle, and switched to another TKI drug

   Try to relax and give it time to do its job.  I know 4 months must seem like an eternity when you suffer with side effects, but I think you have done well.  I always look at the alternative if I had not taken a TKI. 


#6 GerryL


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Posted 20 September 2013 - 08:54 PM


One of the non fun bits about the side effects from Gleevec is that it can also appear to be other things. GP and I were discussing whether I was perimenopausal due to some changes in my period - I'm late 40s so a bit closer to the end of things.

I get night sweats cycling through and have had difficulty sleeping for a number of years now, is it the Gleevec, am I perimenopausal - not sure.

I now appear to have a slight rash on my torso which I'm sure is Gleevec related - I've been on Gleevec for 40 months now. Things come and go, I usually put them down to a side effect as they eventually cycle through.

Talk to your GP and specialist about your lack of period, in the end it may just be stress related, but always good to check things out.

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