Diagnosed August 2003. Gleevec for 5 years, then side effects became unbearable. Switched to Sprycel for 5 years and brain fog, chemo brain, whatever you want to call this horrible side effect, controlled my life! Been taking Boustilif since August 2013. All three drugs have me at PCR and blood work looks great. While on Gleevec and Sprycel my white counts were in the 2000-3000. I had a continuous upper respiratory infection and ear infections along with MRSA. On Boustilif my white counts are 7000-8000 and I feel great with no infections! The stupid chemo brain is really pissing me off and keeping me from being an effective teacher and a mom, I cannot organize my thoughts! finish a sentence! or even remembering what I'm talking about mid conversation! I hate to complain when my life is being saved and blood counts are good , my quality of life sucks, anyone else have this problem this severe and anything that could help other than Ritalin (tried that)?
Chemo brain is controlling my life!
Posted 21 March 2014 - 09:40 AM
Hi Dana. I've been on Gleevec for 10+ years and have been battling chemo fog as well. With my doctor's guidance, I've tried Adderall, Ritalin, Modafinil, and a few other drugs...none of which provided meaningful help since they didn't cut through the chemo fog and had side-effects of their own (i.e. adding to existing insomnia, aggressive mood swings once the drug wears off, dizziness...I was shocked that kids are so easily prescribed these drugs, but that's another can of worms).
My only suggestion is to somehow get an extra hour of sleep during the night + moderated caffeine intake. Something about Gleevec amplifies caffeine's effect on me (not sure about other patients), so I've learned over the years that anything more than 45mg sends me into jittery-nauseus-overdose territory. I've also found that green tea gives a more balanced caffeine delivery than coffee. But that's just me. You have to experiment to see what works best for you, while being careful not to overdo it in a way that ruins your sleep.
Maybe you're already doing this. Sorry if it's too basic, but it's all I've got after 10 years of dealing with chemo fog.
And of course a 45-minute nap during the day can do wonders...but they're hard to come by.
Posted 22 March 2014 - 11:25 PM
Thanks for the info. I drink a lot of canine soda during the day and I know this is bad, but I will now get a grip better. I just assumed that the Caine would help like a stimulant. I also have started exercising and hope that will help too.
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