For the past 6 months on and off I feel like I'm in a fog all the time. I can't concentrate on things, reading is difficult, my eyes get blurry, and having conversations with people is really hard. I can't remember what was said at all. It's a feeling of being high, or drunk all of the time. Both my Oncologist, and Neurosurgeon have run many test to see what might be going on. I have has MRI's, EEG's, and all types of blood test. They can't find anything related to this. Does anybody else feel like this. I do take Gleevec daily, and thought that the Gleevec was causing this. We stopped the Gleevec for a short time, and nothing changed.
This feeling makes it very hard to get through the day. Any help here would be appreciated.
Although I am new to CML and the site, brain fog seems to be quite common in all the meds for CML. I would be curious as to how long you stopped taking the drug, I assume it lingers in the system for a while. I have only been on Sprycel for 4 weeks and I notice a difference in my thought patterns, attention span, I loose conversations while speaking them, and three separate times I have went to get out of the car and still had my seat belt on, for a few moments I honestly did not know what was keeping me from getting out. Although I laugh at these things, they are frustrating and annoying, especially when I used to be a 'quick thinker'. I am sure you will have many people posting to your question with long term experience, and perhaps ways to work around the fog.
Best of Luck
I have tried Sprycel, and Tasigna. My body didn't do too well with the both of them. Tasigna put me in the hospital. Gleevec is the only drug that my body seems to tolerate, but the brain fog is really putting a damper on my daily life. I'm a single dad with a seven year old, and it's hard for me when he's with me, and my brain is all foggy. I'll probably take about a two week vacation from Gleevec, so the brain will un fog. Then go back on it.
CML SUCKS! I think we all have the brain fog, some of us worse than others. I am 4 years since dx. For the last 2 years my husband has been saying he's starting to worry about me. I'm always forgetting things and I am always going to get something and when I get there (like from one room to another) I totally forgot what I was going after. I pulled a good one a couple months ago. We couldn't find our car keys not the spare set,the set with the remote and security system. My husband Ron had gone out with some friends the night before. They went for wings and than stopped at another place for a beer then came home. We have a key hanger where we put the keys as soon as we walk in the door. The day before I used the car and went to the bank and then got bloodwork before he went out with his friends. We called both places where he had been and the bank and the lab where I went but he went out after I got home so he had to have grabbed the keys. I finally called the newspaper and put an ad in the lost and found.All our important keys were on that key ring. Sooo we were getting a bit nervous.Hours later he found the keys, I had hung them up with my pot holders on the other side of the stove.And I put them on the holder that was farthest back against the wall. Then we remembered he didn't even drive the night before our nieghbor had picked him up. I cancelled the ad in the paper but it was to late to stop the first day so I had to pay $22.00. We do survive just give it a bit more time. And I bet your son doesn't notice anything. It does get better. I bought a magnetic board and put it on my refridgerator door I write down the date and day on it any any appts coming up. Since we retired it's really hard to keep track of the days.if I run out of something I write it down right away. We just have to remember to write it down immediately. Sometimes I think I worry so much about forgetting something I make it worse. If you pay attention everybody is like this anymore and they don't have cml. The way the world and economy is today we all have about 4 or 5 things on our minds all the time.
Take Care Billie
For many of us brain fog is very real. If you search using some of the common tag lines you will find quite a bit of discussion on it. Here's one to get you started:
I had fog of varying intensities for the first 6 months. If I had to think of one word to describe how I felt when foggy it would be diminished, it sux! Between 6 and 9 months (where I am now) it has started to clear. Others have written of improvement between 6 and 12 months so hopefully you will get some.
I don't think mine was anywhere as bad as yours except when I was exhausted or nauseated. It took about 3 months for me to realize that nausea was causing / exacerbating cognitive problems and what could rather rudely described as laziness (difficulty in instigating anything). I didn't think that the nausea was very serious because I wasn't throwing up but when treated it we saw big improvements in productivity. I suspect that the better you can get your body to feel the better you mind will do. Are you always foggy or do you have good and bad times?
How much does your son know about your treatment? It must be very hard to have single responsibilities for a seven year old while feeling below par but it is probably more hard on you than on him. My Dad was unwell my entire childhood, there wouldn't have been a single day he was without pain and much of the year he was stuck inside due to extreme sun sensitivity. There were times when he zoned out and somehow as kids we knew to just leave him and come back later. Of course it helped that there was a 2nd adult. What he couldn't do isn't my memory of him and in no way reduced the sum of my childhood. For me I can't think of anything I would want to change, for him I'd want less pain. We grew up with his illnesses, it would be harder to introduce them to a seven year old but don't beat yourself up.
I have never heard anyone mention how to get rid of it, whatever it is. I'm the same way. I've been on Gleevec for 2 1/2 yrs now and I cannot read books anymore! I cannot remember what I had read the day before, very frustrating since I LOVE reading. I have to stick to short stories.
Gleevec and brain fog go hand and hand. Over the years it has either gotten better for me or I have learned to accommodate to it. I have become a compulsive list maker and have found that constantly challenging myself mentally helps. I do crosswords, Sudoku and play memory games on the computer. These things help me to focus through the fog. Sometimes I do get frustrated when I can not think of something that I know all too well or it takes me longer to finish a book than it used to, but I push forward and try to laugh at myself when I walk around the house looking for glasses while they ride along with me hanging off my collar.
Keep the faith - many side effects get better over time.
Hi, Trey, six years into cml, responded quickly to gleevec, asked you about this before......do I dare cut back to 200? My doc says no as he wants to follow normal protocol.......would love to lose the side effects.......joint pain and muscle ache......and fatigue. Thoughts? My six month check up is in feb.........thinking of seeing a cml specialist in the summer....thinking they are more comfortable with less gleevec....thoughts? Thanks! ~Lala
All I can tell you is that I responded quickly to Gleevec, so I believe my body can uptake lower dosage with greater efficiency than many others. So for me individually, it seems that I can do well on lower dosage as a maintenance therapy over the long term. I have been on 200mg for about 3 years now, and continually PCRU for well over 5 years. I doubt you will find any Onc willing to agree with such a protocol. Whether anyone else can replicate my apparent success is beyond my ability to predict. I am merely reporting my experience, not encouraging anyone to do anything in particular. But I can say that I would not have done this unless I had been a quick responder (PCRU within 8 months), and had also been continuously PCRU for about 3 years prior to lowering the dosage.
Hi Trey: That is great how fast you responded to the Gleevec and get to PCRU. I know I was PCRU in 2003, and not sure if I had achieved it before that. I do not remember, and I only have my records back to 2003. I am PCRU for 8 years now, but as you know I would be afraid to cutback my dose. I am going for my PCR test this Monday, and I still get anxious for those results. I can certainly understand you not encouraging anyone else to try it.
It does not work for everybody as we know. I hope you stay on this track, as it really inspires everyone at how well youcan do on these TKI Drugs.
Dear John: It is real, and I did not notice it so much when I started my Gleevec in 2000. It seemed to creep up on me gradually. It can be so annoying when your trying to remember a persons name that you knew your whole life, or a word that you always used. I think with me the added stress in my life has caused some Brain Fog. I cannot blame all of it on my Gleevec of 11 years. I have good days and bad days, and my husband trys to cheer me up when I get down. I find my thinking much clearer when I do not have too much on my mind, or worrying a lot will do it too.
Hi John, The brain fog is a sure thing. I have had it for awhile. While I can't blame it totally on the Gleevec as I take Topamax for seizures and that causes memory loss and word finding issues. So between the two drugs I'm always in a brain fog. I have good days and bad days and there are days when I can't remember a lot of details. Hope you are doing well.
I started on Gleevec, and feelings like those you are describing, and like others are describing, crept up on me slowly over the 18 months I was on it. Fatigue, listlessness, difficulty initiating activities, some mild nausea. It all grew very slowly, really imperceptibly. When I switched to Tasigna, things improved a great deal, but having now been on Tasigna for a bit over a year, I notice that again there is a gradually increasing degree of fatigue, though no nausea.
Fatigue is a listed side effect of Gleevec, Tasigna, and Sprycel alike. I suspect all TKI's are going to show it.
As for what to do about it, first, I attack it the same way I would if I had a bad cold: I push through what I must, and take it easy on myself for the rest. Second, I pick and choose my activities and the timing of those activities. I've forced myself to learn that the length of my active day is shorter than other people's. If some folks can get up at 7 AM and be active until 10 PM, I can get up at 7 AM and be active until about 7 PM. So my day is 3 hours shorter than other people's. I plan my life accordingly. Third, since I switched to Tasigna, I've also started taking a caffeine pill in the early afternoon when I notice that I'm likely to be a bit more fatigued than usual. It does help. I use caffeine pills (NoDoze, Awake, all OTC caffeine pills are the same) rather than tea or coffee because I prefer to know exactly how much caffeine I'm getting, and the amount of caffeine in tea or coffee can vary enormously depending on how you brew it, the source of the leaves or beans, etc.
I wasn't able to take Tasigna. It put me in the Hospital. I broke out in a heavy rash all over my face, and chest. I couldn't function at all. The fogginess was elevated by 100%. I was a mess. I also had the same problems with Sprycel. Gleevec is the only drug my body will tolerate except for the brain fog.
It does seem to be worse for me if I get more sleep, it is a strange phenomenon. I have went to bed early, just to feel unrested and tired upon waking. One thing I noticed, and many seem to agree, if you can push yourself a bit, even add exercise to a daily routine, small amounts and slowly work up, it does seem to help. I swear I do better if I get moving early and stay moving, but if I sit first thing in the morning, then I swear I am worthless the entire day.
Best of luck!
CallMeLucky, you described my situation exactly! It really is hard to strike a balance. One thing I had to do even before being diagnosed was to drop my work hours down. (I'm a civil engineer, and due to the economy the work load was already dropping two years ago when my symptoms were starting.) I find that going to work after lunch gives me my best working conditions. My clients have been great about scheduling around my health issues. The one day I come in early is a Monday for a traditional staff meeting, and I find I usually have to stay home on Tuesday to let my body recover.
Not sure how much age plays into the brain fog. I was diagnosed at age 59, but the brain fog didn't show up until I went on Gleevec. It came on fast. My wife just finished chemo and radiation for breast cancer, and she had much the same reactions as I did. Even though she has completed treatment the problems of forgetting things, repeating things, and substituting wrong words are still there. I'm just glad neither one of us is running for public office. The talk shows would have a field day!
Hi John: I guess you can see that so many of us are dealing with this. I think thats the answer to just deal with it, knowing that whatever drug your on is doing what it is supposed to do for the CML, and just try to work around it.
Also, I found if I do not concentrate on it so much I actually cope better. I do not sleep well, and I also either feel very tired or I still feel horrible when I get too much rest. There is no happy medium. I have been on Gleevec since 2000, and its now 2012. I am just glad its working.
I guess a lot depends on your age also, and if you have a job that requires a lot of thinking and alertness it would be a concern. Don't stop the Gleevec to try to overcome the side effects. You would just be looking for more trouble.
Just know your not alone, and there is nothing else wrong.
I think I just posted this on another thread, but I have found that doing puzzles or games on the computer really has helped with the brain fog. Just like exercising your body, retraining your brain to be active can help. I play wordtwist (a boggle like game) and fancy solitaire games, where you have to learn new rules to play about 100 different versions of the game. I also find the brain fog is much worse when I am tired. or have pushed myself too far, and did not get my now daily required nap.
I get this occasionally on Tasigna. At first I had trouble coming up with words--although before I was diagnosed, I was bursting vessels in my eyes, and one day I had a hard time with tip-of-the-tongue stuff, maybe I had a small vessel burst in my brai (we didn't do a scan but it's something they asked about, but I didn't recall that it happened until later).
Nowdays, I have the problem off not really being able to "get with it", like I can't really focus and mundane tasks just seem grueling and I don't want to do them. So it's either brain-fog or just laziness
I have been on Gleevec for 6 1/2 years and the first couple of years was bad. Now I am doing pretty good. However I just turned 64 and I think as most people age, maybe a little forgetful, but nothing like it was when I first started on Gleevec. I felt like I was in a third dimension or something, hard to explain.