20 replies to this topic

[rmerikle]

My wife has been on Gleevac since July of last year and we are now down to less then a tenth of a percent and hoping to achieve undectable next go round. The problem is she is experiencing memory loss. While this seems to be a side effect there does not seem to be a lot of information out there. Also most say it tends to get better over time, but she is having the opposite problem. It seems to be getting worse. I think last night was the final straw that has us worried. She not only forgot to set the timer for the cookies and only remembered them when I mentioned I smelled something burning, but she also instead of turning the burner off on the stove turned it to low and when I woke up this morning the whole kitchen smelled of gas. We are both now worried about what is next and have we entered the arena of unsafe.

 

Of course the easy answer is reducing the level of medication, but I for one am very hesitant to do so since we are getting such great results. I might mention also that she is only 37 and we are in this fight for the long haul.

[IGotCML]

I have been on Tasigna for 2 years and have minor brain fog.  My problems arise when I am not concentrating fully on the task I am doing. For example today I went to get my car washed, which is under .5 miles from my house, but started driving to a nearby Mexican restaurant that visit about once a week.  After driving for 5 minutes I realized my error. I don't consider that memory loss, just a lack of focus and I blame Tasigna for that.

 

Is that similar to what your wife has been experiencing?

 

Was she making cookies and working in the kitchen while doing 10 other things? Women are notorious for overdoing their multitasking.

[Marnie]

My guess is that it's not so much "memory loss," as an over-loaded brain right now.  It takes awhile to get back to normal.  I know that it took me quite awhile before I could switch my brain off from the constant background noise of "I have leukemia."  I don't know if your wife works, but dealing with cml, working, and running a household can be overwhelming.  And then add to that the mental stress of trying to not let everyone know what you're feeling. 

 

Hopefully, after awhile, she will find her new normal, and will feel like her old self again.

 

Good luck, and don't let her beat herself up about things.  Yeah, the stove was scary.  Maybe she needs to take a break from the cooking for awhile and just relax.  Do some meals out, order take-out, or have someone else do the cooking. 

 

And. . . if she (and you) are still worried. . .start building in new habits:  always use the kitchen timer when cooking something.  Always put your keys in the same spot.  Put up a whiteboard and jot down things that need to be remembered.  Etc. 

[Dom]

On my very first day, my onc told me about gleevec head, and he said the best way to avoid it is to join a gym. Three times a week, I'm up at 6:30 and I do half an hour on simple weights, and end with 15 minutes on a bike. I get mild fog about once, twice a month, and it's simple stuff, like forgetting where I'm going, but I really think it's more a case of not getting enough sleep.

[mlk210]

Hi rmericle. I'm similar to your wife. I'm 38 and was also diagnosed last July. Been on Sprycel 100mg since August. The other day I was riding in the car with my kids and they were asking about a neighbor of ours. Suddenly, I had no idea what his name was and he's lived by us for five years. I racked my brain and could not remember. it seemed the more paranoid I became that I couldn't remember, the more the block remained. Finally, pushing it aside and preparing to call my husband since I just had to know, it came to me. 

 

I'm not sure if you have kids or not, or if your wife works. But I was just thinking about my memory blocks since diagnosis and I've caught many of my friends forgetting similar things. We run ourselves crazy with the kids, the house and work. I do things on auto pilot constantly and even though, like your wife, I'm doing well with treatment, the leukemia diagnosis is still taking over my brain. Even before my diagnosis, I remember forgetting I was allowing my cookies to cook a minute or two longer. Or that I kept the stove on low to keep something warm. Heck, my husband's done it too. I'm a huge OCD person though, so my doors are checked more than once before i go to bed and you can catch me opening the oven door just to make sure it's cool (crazy, I know).  Maybe just do a little more checking just to be sure.

 

I'm not discounting your concern and I do hope it's not a major side effect for her.

[gerry]

I was on Gleevec diagnosed June 2010, didn't get the brain fog until about 3 years later, forgot names, appointments, words etc I had reduced down to 300mg at that time after a year of PCRU.

It could be the fog, could be the additional stress of CML, could just be she was having a bad night.

[Kittywatkins]

I was recently stating that I was feeling weird. More so than other days. I didn't remember if I washed my hair or face or feet. So I had to step back in the showers like three times. I notice that on my bad days I seem to get very confused and forgetful along with other side effects. I've learned to stop what I'm doing and take a nap. It gets a little better when resting. I go to the gym 5 times a week and it helps me a lot. I forget to turn stove off or I burn my food more often. Hell, I forgot to put a main ingredient on one of my dishes and remembered after my hubby took it to work and I had to call him to warn him. Being that he swears I'm an amazing cook. I felt bad! I can't multi task anymore but I learn to live with it. I have post it's all over my fridge and that helps a lot. I've had cml since 2012. On sprycel 100mg and unfortunately still feel like a zombie. If I work out that's all I do I dont care about how clean my house should be or if my laundry is piling up. I do it when I can. I hope she gets better and just take it one day at a time.

[PhilB]

It's important not to overthink this as everybody has these kind of problems sometimes, especially when tired and stressed (and believe me your wife is still going to be in the 'stressed' stage over her CML). It's going to take a while for everything to settle down so that you can get a handle on what really is attributable to the drugs.  Having said that, brain fog and memory issues are something that lots of us here do have to cope with.  Several times I've been asked about the status of a task at work and quietly panicked as I had no recollection whatsoever of being asked to do it.  When I check the email trail I usually find that not only was I asked, but I actually did it and everything is as it should be, I just have absolutely no memory of doing it.  This is annoying, but definitely not the end of the world.

As Marnie says, habits are your friend.  Go chat to a few elderly people as they tend to be the experts on living with an unreliable memory and have had plenty of time to develop coping strategies.

[Trey]

She has not been on the TKI drug long enough.  When we say it gets better over time, that may mean a couple years, not 9 months.  She may just be at peak brain fog at this point.  And it is often not simply the drug, but also the mental distraction which comes with a serious illness.  It would be wise to double check safety issues for a while, but she should improve as time goes on.

[Billie Murawski]

I was on Gleevec diagnosed June 2010, didn't get the brain fog until about 3 years later, forgot names, appointments, words etc I had reduced down to 300mg at that time after a year of PCRU.

It could be the fog, could be the additional stress of CML, could just be she was having a bad night.

gerry, have you ever called someone and forgot who you called when they answer the phone ex. drs. office,plumber, estimates,

I do that all the time. So frustrating!

[gerry]

No, I'm more of a forgot who I told something to and wind up telling some people the same things twice.  When I had the Gleevec fog I was starting to forget words, which was slightly annoying.

 

Stress increases memory loss and you've had a bit of that lately looking after Ron. How is he going at the moment?

[alexamay09]

I can relate so well to the memory issues.  I experienced these on sprycel and now am on Gleevec.  Simple things like forgetting a name, or if I have already said something or done something.  I am a psychology teacher so its not great!.  Add insomnia, flushes, sore eyes, blah blah blah.  I am just relieved that others experience the brain fog too!

 

alex

[ricodence]

Hi rmericle. I'm similar to your wife. I'm 38 and was also diagnosed last July. Been on Sprycel 100mg since August. The other day I was riding in the car with my kids and they were asking about a neighbor of ours. Suddenly, I had no idea what his name was and he's lived by us for five years. I racked my brain and could not remember. it seemed the more paranoid I became that I couldn't remember, the more the block remained. Finally, pushing it aside and preparing to call my husband since I just had to know, it came to me. 

 

I'm not sure if you have kids or not, or if your wife works. But I was just thinking about my memory blocks since diagnosis and I've caught many of my friends forgetting similar things. We run ourselves crazy with the kids, the house and work. I do things on auto pilot constantly and even though, like your wife, I'm doing well with treatment, the leukemia diagnosis is still taking over my brain. Even before my diagnosis, I remember forgetting I was allowing my cookies to cook a minute or two longer. Or that I kept the stove on low to keep something warm. Heck, my husband's done it too. I'm a huge OCD person though, so my doors are checked more than once before i go to bed and you can catch me opening the oven door just to make sure it's cool (crazy, I know).  Maybe just do a little more checking just to be sure.

 

I'm not discounting your concern and I do hope it's not a major side effect for her.

Hi there my name is Rico I am on the same drug, and have been on it since november.  I have not experince memory loss as much as distraction.  I feel more often distracted..  

[ricodence]

Use http://www.lumosity.com to help sharpen the brain

[Billie Murawski]

gerry, Ron is doing great thanks for asking, I can't help but being afraid it will happen again.His bw will show an improvement in one thing but something else will show up so he's pretty fed up with doctors and bw. He remembers nothing from his hospitalization, so he doesn't realize how sick he was. I think I have ptsd and the voices will make it all go away . Hee Hee

My daughters birthday is in June and last week I could not figure out how old she is it took me quite a while to remember. Isn't it amazing how fast they become older than us.  I think we should get some recognition  Brain Fog Awareness Week, that way we wouldn't have to explain ourselves for a whole week!

[pammartin]

Billie,  So great to hear Ron is doing well.  As to your daughter's age, I figure after so many years we gets stars for remembering their names and that they are our kids.  Ages don't count. 

 

Brain Fog Awareness Day, we need to speak to our senator's immediately.  They don't seem to be doing much else, perhaps we can get this a National Holiday by summer.

 

I hated brain fog, my worst memory, (although that might be inaccurate because I am not sure what I remember) was trying to tell Bob that I needed a pound of butter out of the fridge.  I was staring at the thing, I know it keeps food cold, I knew that I should know what it is called...after a few moments of him allowing me to flounder by saying 'in that...', 'what is the name of that stupid appliance',... (funny I knew the appliance word) I said, 'It's in that damn thing that keeps stuff cold that I can't remember the name of.'  He finally got me the butter.

[KerriD]

I have been on Tasigna  4 years...undetectable for 3 1/2 years now.  Brain Fog has been the hardest part of my journey.  It affects every part of my life.    About 6 months ago I went to see a psychiatrist about it.  He put me on a medication called VyVanse.   It is for Attention Deficit Disorder.   It has helped me tremendously!!    It has been life changing ..

[Billie Murawski]

Billie,  So great to hear Ron is doing well.  As to your daughter's age, I figure after so many years we gets stars for remembering their names and that they are our kids.  Ages don't count. 

 

Brain Fog Awareness Day, we need to speak to our senator's immediately.  They don't seem to be doing much else, perhaps we can get this a National Holiday by summer.

 

I hated brain fog, my worst memory, (although that might be inaccurate because I am not sure what I remember) was trying to tell Bob that I needed a pound of butter out of the fridge.  I was staring at the thing, I know it keeps food cold, I knew that I should know what it is called...after a few moments of him allowing me to flounder by saying 'in that...', 'what is the name of that stupid appliance',... (funny I knew the appliance word) I said, 'It's in that damn thing that keeps stuff cold that I can't remember the name of.'  He finally got me the butter.

Pam, I couldn't remember what my ice cube tray was called and I was holding it in my hand. Is your brain fog better?

[dede5]

I live with the brain fog every day, but didn't realize how bad it was until yesterday. A couple of months ago, our great nephew was born with multiple health issues. We've had him on the prayer list at our church, and he's been very much in the forefront of our thoughts and lives. Yesterday, our church held a bunny breakfast/Easter egg hunt. A woman there asked me how the baby's doing. I just stared at her, trying to figure out what she was talking about. She made a couple of attempts to refresh my memory, but I just couldn't get ahold of it. That's one of many reasons why I just prefer to stay home.

[JRsBoo2]

Don't let ANYONE tell you it isn't the drugs.  I insisted that I be tested because it was so bad, and the testing (same as for brain injury) report came back with huge holes in it, like they see with traditional chemo.  The instant I stop taking the pills, my brain bounces back.

 

I am on lesser dose now, but at the top end, could not remember new faces at all.  Or new information.  I would have crying fits because I was so freaking frustrated that I could not remember things.

 

I still have significant trouble.  Can't remember conversations and other things.

 

And it is different.  It feels physically different when trying to remember.  If it is a normal, gee I forgot, thing, then you can feel it kinda at the edge of your brain...........and sometimes it comes back.

 

This is like looking into a vast empty cavern.  There is simply nothing to retrieve.  It was not stored into short term memory correctly, and doesn't make it into long term at all.