61 replies to this topic

[Terran]

Just started tasigna and I seem to be having, like, micro or nano black outs, in addition to the general fog and aphasia. Black out sounds too severe. Micro daydreams; it's very disconcerting when I snap back to what I'm doing and I'm starting to do my task wrong. Someone should research TKIs and attention deficit disorder. Is anyone else's brain fog like ADD? Maybe I just have ADD. Could my high platelets have caused micro strokes before my dx? I've left a message with my onc that I'll take myself to the local neuropsychologist, unless he has someone else to recommend.

[snowbear]

I'm on Gleevec and I wouldn't describe what I'm feeling as brain fog, but more light headedness.   I feel like I'm going to pass out at any second. I'm mildly anemic, but don't know if that is getting worse.

[TeddyB]

Many people seem to experience brainfog on the TKI`s.

I am one of them, however, it was worse during the start of treatment, now i just feel slow and stupid when ive been at work for too long.

During the start of treatment, there were times i couldnt even focus on what people were saying at all, i just zoned out completely.

Yours will hopefully get better with time.

[SusanL]

Today I started researching how to know when brain function/memory loss is a problem.  Of course the only things that come up are dementia and Alzheimer's.  I am getting older, 74, but don't want to think about either of those.  Then I saw your post.  thank you. I thought the brain fog experienced in the first few years eventually goes away.   I  have been on TKI's 10 yrs and would really like to see some research on the long effects of TKI's have on us.  

   Grateful for still being  able to ask that question 

[gerry]

I thought I had escaped the brain fog until about three years into taking Gleevec. During the last couple of months of taking the Gleevec, I was forgetting appointement, words etc.

 

It was the first side effect that disappeared after stopping, not sure if that was because it was last on, first off.

[dede5]

After 4 years, brain fog is still my constant companion, but Terran, when you said "micro or nano blackouts", it reminded me something I had often the first couple of years, but has waned to now and then. Mine, though, is more like the blink of an eye and is several in a row, but it's definitely blackouts. Like you, I wondered if that was mini strokes, but doesn't seem to be any after effects.

[cwade61]

I took some recent advice of taking Magnesium Taurate for the brain fog. Started about a week ago, but it's hard to gauge a real effect. Time will tell, but I'm willing to try (mostly) anything.

[August1]

I am taking Sprycel, and can definitely relate to the brain fog. Interestingly, I'm finding that I have more of it now after almost three years of treatment. Sometimes I'll find myself reaching for a word or a name, or a sentence may come out slightly differently than I had planned. I also find myself getting wrapped up in thought and I'll do something careless like drop a utensil or hit the wrong button on a remote control, etc. I feel it's tied in with the fatigue and headaches I experience as well. I am sure I can probably contribute some of it to age, exercise, stress, etc., but I do feel the drugs have a very real impact.  

[rcase13]

I have the same problem. I am in a similar situation.

[chrissy778]

I could not remember if I took my pill the other night, I stared at the package but could not think if I was remembering taking it from the night before, I still have no idea. I have started to put a check on the calendar now as soon as I take it. Sometimes I will ask my daughter something and she will say "how many times do I have to tell you" I am just like tell me again. Its like I don't pay attention. I think I might have been like this all through school lol 

[gerry]

Gleevec comes in a blister pack in Australia, I used one of the thin CD pens and wrote day and date on every tablet in the pack.

[Antilogical]

I use a weekly AM/PM pill container, which I fill on the 1st day of the week.  When the pills are gone for that day & time, there's no question that I took them.

[DebDoodah22]

> TeddyB
"now i just feel slow and stupid when ive been at work for too long."
Oh wow Teddy, I do hear you ...this brain fog thing, has been an enormous struggle for me....going from super sharp writer and detail oriented problem solver to periodic spells of overwhelmed head spinning confusion...which seems to get worse as the day goes on....or as I become more fatigued.

What dose of Sprycel are you on? I'm on 80 and wish it was lower.

> Mr T.
I have no advice, but I am right there with you and Rcase!
My job requires a great deal of attention to detail...I have been transferred around internally since my Dx and my new supervisor has put me under even more pressure by expecting 55-60 hour weeks and projects that involve incredible reams of data analysis or minute replication of detail...and highly technical writing projects...when I tried to talk to HR, the conversation took a bad turn so I stopped short of asking for help...
at 63 I am not set up to retire yet, I need to put in at least 2 more years,but I worry on a daily basis, if I will be able to contribute at a level that will keep me employed. I am looking for solutions, but not coming up with much.

I have been hoping the volume and timelines for projects would slow down ...I seem to be able to manage better - given a slower pace or with less pressure for extreme accuracy, or in a 40 hour week. To top it off the onc doesn't relate to brain fog side effects...and suggested a shrink....I am open to advice. What say you fellow travelers?

[TeddyB]

Deb: 400mg Gleevec here, take it with breakfast, and by lunchtime i feel like the village idiot......i think the fatigue probably has something to do with it. When it starts happening i get a mild feeling of panic, and just want to go home or sink through a big hole in the ground.

 

MrTee: I also have a job that requieres some level of thinking/concentration and technical skills. I have been open with my employer from day 1, and i am now working reduced hours which really helps, especially when after work there are 2 small kids waiting for me to be a father for them. I try to get an hour or two of sofa time by myself before kindergarten is finished.

Hope you find a way to sort your work issues, as i can only imagine not all employers are as tolerant

[Billie Murawski]

I definitely think tkis cause brain fog after seven years I am still getting worse and I am only on 20 mg Sprycel.  Sometimes I think brain fog and brain clutter go hand in hand. Does anybody else try to change their tv channel with their mouse or answer their phone with their remote, I also try to make phone calls with my remote sometimes I can't remember what to use, my mind will go blank and I'm looking at three objects and can't remember which one does what. So I just keep pushing buttons until something happens, usually I get an operator but she's no help.

[Woltanac]

Since April 2014, I have been on Gleevec, Tasigna, and now Iclusig. Since starting the lowest dosage of Iclusig (15 mg per day), I feel much sharper and have a better time concentrating on what I am doing. I should note that I have dropped trying to work, so that probably helps some.

[PJM]

It is true, at least in my case, that I feel the most like me on Iclusig. The brain fog, feeling somewhat disconnected with my body, and being unable to remember things occurred when I was on tasigna and especially when I was on sprycel. Despite the fact that Iclusig has such a high side effects profile I feeling really good on this tki. It has lowered my pcr to 4.5, the lowest ever but the trade off has been extremely low blood counts yielding 1 x if not 2 x weekly shots of neupogen to boost white counts that hover around 1.7; numerous platelet transfusions when I am at 15 and lower, and blood transfusions when I hit 8 and lower. In the past 6 weeks I have had 14 platelet and 4 blood transfusions. I am hopeful the numbers will turn toward normal but The good news is that I have no brain fog!

[Gail's]

Celebrating today for not feeling that bad! Yes, forgetful like above. But today is good and hoping tomorrow's good too! Billie, I think we're all overloaded with devices so why wouldn't you mix them up. I'm constantly trying to make a phone call with the number keypad on my computer at work!

[Gail's]

Celebrating feeling pretty good today and hopeful tomorrow will be good too! Billie, why wouldn't we mix up the many devices we're bombarded with? I'm always trying to make a phone call with my number keypad on my computer at work!

[Gail's]

Oops. Double post, same sentiments!