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Fed up with the Gleevec fog!!!

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#1 jstevens11


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Posted 11 March 2012 - 05:33 PM

I have tried asking Gleevec in the day, the night, with dinner, and with lunch with no change to the Bain fog. The only time I feel better is when I'm off it. I think it's time to go against my doctors advice, and stop taking the Gleevec for a period of time. I want my mind back!!! If I don't do anything about this fog. I will lose my job. I deal with numbers all day long, and it's getting harder and harder every day to do my job. I can't afford to lose my income, and our wonderfull SS admin won't let me collect disability if i chose to leave work to continue the Gleevec. So, it's either stop the Gleevec in order to work and make a living, or continue the Gleevec, lose my job, and end up living under a bridge somewhere.

I have also tried Sprycel, and Tasigna with no luck. The Tasigna put me in the hospital.


#2 Judy2


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Posted 11 March 2012 - 06:47 PM

Hi John,

I'm dealing with Sprycel brain fog now and searching for a solution myself. I can tell you if you discontinue your Gleevec you won't be making a living for long, as a matter of fact, eventually, you won't be living period!!! I don't know where you are in your treatment, what your PCR is and for how long you have had CML. If you have been PCRU for 5 years perhaps you could talk to your onc about reducing your dose. Just a thought.


#3 jjg


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Posted 11 March 2012 - 07:10 PM

Hi John,

I also have the fog thing but not at the same level all day. I did start to break out of the fog after 7-9 months on 600mg Gleevec but 3 months ago my dose was increased to 800mg and that has messed with me again. Early this year I finally recognized that despite being able to attend work 8 hours a day I was not able to work those 8 hours. I may be different from you here but I find if I rest after the dose I do get some good hours after that. Often resting means sleeping. I was fighting this resting idea pretty hard but seems for me fighting isn't the way to win. If I don't rest the whole day is one long crap shoot. I'm currently working part time 0.7 and actually getting more done in that period then when I was "full time". Look it's much easier for me because I'm not on 800 for much longer (long story) and therefore we are able to use my sick leave to cover this.

It sucks but Judy is right. The fog is real but unfortunately CML is real too.


Dx Dec 2010 @37

2x IVF egg collection

Glivec 600 & 800mg

PCRU March 2012

Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon

Nilotinib 600mg Oct 2012

PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips

April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy

Healthy baby girl Jan 2016, breastfed one month

Nilotinib 600mg Feb 2016

MMR May 2016

PCRU Feb 2017

#4 hannibellemo


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Posted 11 March 2012 - 07:32 PM


I'm sorry you are having such a hard time with brain fog. It is a recognized side effect of chemotherapy and it is also real and recognized with our targeted therapy. Have you talked to a lawyer who deals with SSI issues on a frequent basis? It seems to me that you should be able to qualify. It may not be on the 1st go around and I would definitely want to hire someone to get me through it. If you go up to the right corner and do a search for SSI or SSID.

Here is a link from one of the discussion threads  http://community.lls...age/91756#91756

It isn't easy but some people who aren't in blast phase have succeeded.

Good luck,




"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>

#5 Guest_billronm_*

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Posted 11 March 2012 - 10:21 PM

Hi John,

   I know what you're going through right now but going off your meds is not the answer. You'll be playing russian roulette with your life. Maybe you could ask your onc about lowering your dose a bit, that might help. I'm going on 5 years with cml,and it seems like there are periods of time when I can barely function. These spells come and go. I don't know if it's seasonal but it seems like we all have more trouble with it around the same time. If you go back and read some older posts we all seem to flake out together. I'm having a terrible time right now, it's funny but it really isn't I went to make my bed the other day and I forgot how! My mind just went blank. I should have just climbed right back in. Anyway I figured out how to do it, but it was on my mind the rest of the day, and I think I made my day worse just by thinking about it. Cml is a rough burden to carry around,and throw in the stress of everyday living no wonder we're going nuts. So I decided the next time I go to make my bed, I just might not do it! Because it upsets me. Now say the pledge of allegiance,The Our Father, and have 5 glasses of wine. That makes you a patriot,a christian, and a wine connoisseur,that should take you're mind off cml!

       Please hang in there and don't mess with your meds.         Sincerely Billie

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