20 replies to this topic

[drowe920]

Apparently my walk in the National Forest on Sunday was not such a great idea (I live in central Fla) for two reasons one even though it was a partly cloudy day the sun wore me out fast and two I pushed myself to go a mile into the forest but did not think about having to walk back out. Needless to say I will never do that again.  My question is sometimes when I am talking I will think of a word but wont be able to say it. Its not all the time but starting to happen more often. 

[helenet]

Hi Don,

I looked at your profile to see what med you are on but none are listed.  Since you have recently been diagnosed, your blood counts are probably part of the cause for the brain fog.  The first 6 months from diagnosis-- I was in a constant stage of brain fog-- and getting in trouble for it at work.  I am an analyst and our company was implementing a new computer system at the time, and my roll at work was critical.

The meds also can cause brain fog-- however this gets better as you transition.

As for wandering off in the woods -- be careful of the son-- most of us cannot tolerate more than a few minutes of sun any more thanks to the meds!  And if your blood counts are off I am surprised you did not curl up under a shade tree and take a nice long nap!  You are in a "new normal" now - and this requires adjustments on your part.  It will get better with time as everything stabilizes!  BTW- I rarely get brain fog anymore—I am PCRU (on Gleevec) with stable blood counts - and I take 2 fish oil capsules a day.

[helenet]

Big typo-- son for sun -- HA!  So much for the brain fog-- but I have son on the mind-- as mine won the Apollo Theatre (NY) competition a day ago and I was just watching the newly posted video!

Amateur Night: Broadway 03.16.11

[CallMeLucky]

Frustrating isn't it?  I get this from time to time.  I am on Gleevec for about 9 mo.  It is not constant, and I can attribute some of it to being more easily distracted now (more on my mind I guess) so for me I think there is a psychological element to it, but there is also something very real about what is happening in the brain.  Like you said sometimes the words are there, but you just can't get them out.  I imagine it as Gleevec has shut down a pathway and now the thought has to take an alternate route that takes a little longer.  I know that is not really the case, Gleevec doesn't pass the blood brain barrier, but I still try to make myself laugh thinking, the thought is on its way and it will get here in a minute or two.

Fortunately it is not constant.  It was one of the earlier side effects I had and it has not gotten any worse.  Some of it may also be related to fatigue.  Harder to think when you are tired.

Be careful wandering off into the woods, don't go all 127 hours, make sure someone knows when you are heading out on excursions like that.

[Susan61]

Congratulations on your son winning the competition.  I just watched the video.  So much talent, and I enjoyed it.

As for the Brain Fog.  I just experienced it today, and I am on Gleevec for 10 years.  I get it all the time.  I could not remember my husband's boss's name,and it took me awhile to remember it.  I have been having a rough time with a lot of things, and I think we can sometimes just get overload of the brain with all our constant thinking and worrying.  Just glad I am not the only one with this complaint.

[MJL]

I too get "Brain fog". I have been on Gleevec for almost two years. I agree with Susan, I think we all have so much on our minds that the occasional "what am I trying to say/what was it I was going to do"? happens to many of us.  Of course it could be that I am 63, and the old brain cells are not aging gracefully.

MJL.

[hannibellemo]

Congratulations to your son on his win. Fantastic voice!

[hannibellemo]

Don,

I can relate to the sun issues. I didn't notice any issues when I was on Gleevec, I went to Belize, although I preferred being coastal rather than in the humid inland, sailed all summer and no problems.

With Sprycel it's different all together. I actually start to feel ill when out in the summer sun for too long and it takes a while to recover. Don't really know if it is the direct sun exposure itself, or if I am just reacting the the '"heat". I suspect the latter. It got to the point last summer where we took advantage of night sailing more than day sailing. (Now, if we could just take advantage somehow of the "vampire" craziness with this.)

At work I can always go to a colleague and say "I'm trying to think of a word", I give her hints and she gives me words. I also do the same for her so I don't know that we are really all that different than anyone else in that respect. I've always been told that if you have trouble remembering the name of something, it's not a problem. If you have trouble remembering what something is used for...that's a problem. I try not to worry about the brain fog.

However, just today I realize I've forgotten the useage of "then" and "than". I'm pretty sure I've used both of them incorrectly today in various posts. <Sigh>!

Pat

[hannibellemo]

Just in my e-mail today. Cure is a good magazine with in depth articles, IMHO. I'm looking forward to the spring issue as it will address this very topic, chemo brain. The whats, whys and hopefully hows to deal with it! BTW, this is a free magazine if anyone is interested and not familiar with it.

http://media.curetod...rt- Spring 2011

Pat

[drowe920]

I hear you I am in a new normal. I take Gleeevec once a day. I am 3 months into it and finding my zone.Hey congratulations to your son. Hey were do i post all the drugs I am on .

[drowe920]

Yeah all I was thinking about was be airlifted out lol.  I will not be doing that any more.  I check out the Chemo Brian thing on the Mayo clinic wed site its a really thing they just do not know why.

[drowe920]

After my outing I was sick for a few days and had the taste of gleevec in my mouth.  I get really frustrated when I can not say a word becuase my brain knows it but my mouth will not say it. 3 months into it and finding my limits.

[SunNsand]

A memory trick I use when I can't think of a word or someone's name is to think of the alphabet. I start with A, think about each letter quickly and 99% of the time I can figure out what letter my mystery word starts with, then USUALLY, I can remember the entire word. My daughter is a speech therapist and she taught me this trick and it works!

SunNsand

[Susan61]

That Alphabet system does work.  I just started to do it one day when I could not remember something, and I have been doing it ever since.

It always works for me somehow too.

[Fontenrose]

This article says that 'chemo brain' can last two to five years. Lots of comments too.

http://community.nyt...ort=recommended

[CallMeLucky]

I believe they picked up that story from this article (or a similar one) and their title left out a key part, "after marrow or stem cell transplant".

Unfortunately, since we don't stop taking our treatment I don't anticipate things getting better at the 5 year mark.

Still, I'll take my TKI over the kind of stuff they are talking about in the article any day and twice on the weekend!

Most Patients Recover From 'Chemo-Brain' By Five Years After Marrow Or Stem  Cell Transplant For Cancer

03 May 2011

Many   patients who undergo bone marrow or blood stem cell transplantation to  treat  blood cancers or a "pre-leukemic" condition called myelodysplasia  experience a  decline in mental and fine motor skills due to the toll  of their disease and its  treatment.

A new study led by researchers at Fred Hutchinson Cancer  Research Center, published in the May 2, 2011 online edition of the Journal  of Clinical Oncology,  found that overall, these effects are largely  temporary and that most  patients can expect a return to normal motor and memory  function within  five years. However, the study also found that deficits in fine  motor  skills and verbal memory remained for a significant percentage of  patients  and warrant more attention by health care providers.

It  has been widely  documented that powerful chemotherapy drugs that  leukemia and lymphoma patients  receive prior to hematopoietic  transplantation (HCT) - as well as medicines to  combat  graft-versus-host disease - can impact motor and memory skills. The   purpose of the new study, led by Karen Syrjala, Ph.D., director of  Biobehavioral  Sciences at the Hutchinson Center, was to determine  whether patients recover  from these neurocognitive deficits within five  years of transplant.

For   the study, Syrjala and colleagues identified 92 patients who had  received an  allogeneic (cells from a donor other than themselves) bone  marrow or stem cell  transplant for chronic myeloid leukemia, acute  leukemia, lymphoma or  myelodysplastic syndrome, an umbrella term for  several "pre-cancerous" diseases  in which the bone marrow does not  function normally.

For  comparison  purposes, the patients were asked to nominate a  case-matched control, such as a  sibling or friend of the same gender  and similar age who had neither received a  transplant nor were in  active cancer treatment. The transplant patients and  control subjects  were then given a battery of tests - all by the same test giver  - to  assess their memory and motor skills.

The  tests included immediate  and delayed recall of a list of words, saying  out loud as many words as possible  that begin with specific letters,  the ability to sequentially link letters and  numbers on paper, learning  to match numbers and symbols and write the symbols on  paper to match  random numbers, and putting toothpick-sized pegs into holes as  fast as  possible.

Analysis  of the tests results showed that most  patients made substantial  improvements in neurocognitive function over the five  years after their  transplant. "However, contrary to expectations, neither motor   dexterity nor verbal learning and retention improved between one and  five  years," the authors wrote. "Deficits were most notable in motor  speed and  dexterity."

Described  as mostly mild, the neurocognitive dysfunctions  remained at five years  for twice as many long-term survivors (41.5 percent)  versus controls  (19.7 percent).

Syrjala said the researchers were  surprised by the evidence of continued impairment.

"We  really thought  the rates would be lower," Syrjala said. "We were  thrilled to see that people  recovered substantially, but we also were  surprised that so many people did  continue to have measurable deficits  in some areas even after five years."

Syrjala  said the reasons for persistent deficits are unknown and more  research  is needed to examine the causes. One theory is that some cancers,   especially leukemia and lymphoma, are "whole-body" cancers because  blood  circulates throughout the body and these diseases may cause their  own  neurocognitive impacts, in addition to what chemotherapy may  contribute.

"The  major clinical implication of this research is to assure HCT   recipients and their health care providers that further progress will  occur in  their information processing capacity between one and five  years after  treatment," the authors wrote. "However, it is equally  important to validate for  long-term survivors that not all HCT  recipients fully recover neurocognitive  function by five years. These  results provide further indication of the need for  cognitive  rehabilitation strategies after one year for those residual deficits."

The  investigation is the first to prospectively follow the same group of   patients for five years for any cancer, according to the authors. The  study  builds upon previous findings by Syrjala and colleagues,  published in 2004,  which followed the same group of patients to one  year after transplant. That  study also found that neurocognitive  impacts of transplantation are largely  temporary.

Co-authors  on the paper included researchers from the  University of Washington  School of Medicine and School of Social Work and  Arizona Medical  Psychology. Grants from the National Cancer Institute funded the   research.

At  Fred Hutchinson Cancer Research Center, our  interdisciplinary teams of  world-renowned scientists and humanitarians work  together to prevent,  diagnose and treat cancer, HIV/AIDS and other diseases. Our   researchers, including three Nobel laureates, bring a relentless pursuit  and  passion for health, knowledge and hope to their work and to the  world.

Source:
Fred Hutchinson Cancer Research Center

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Article URL: http://www.medicalne...cles/224065.php

Main News Category: Stem Cell Research

Also Appears In:  Cancer / Oncology,  Transplants / Organ Donations,

[Lynne D]

I have been on Gleevec for 6 years. Tried Tasigna but that is a whole different story. I had to step down my position as Asst. IT Manager at my job because 60 hours a week and my memory were nearly impossible. I am only working about 30 hours a week now and still have my health ins. but can't work much more than that or I'd be in bed the rest of the time I am home. So now I do a job that I do just to get paid and have insurance and not the job I loved so much.

Sometimes I'll be driving (locally where I've lived for 37 years) and I just won't know where I am. It scares the crap out of me because I have to drive a mile or 2 to recognize where I am. I love to read and had great spelling and vocabulary skills....now?? not so much. the words are there but I am blank. I start playing freaking charades to get my  point across. Usually someone can figure out what I am trying to say but it is so aggravating. My mom likes to say well you are getting older you know...but I know it's the Gleevec. Gleevecs side effects have not treated me too well.

So anyway from what I understand and with others I've talked to you it isn't uncommon. Everyone is different and I guess the degree of fuzz is individual. Some days are worse especially if I am tired.

After 6 years I don't suspect it will go away anytime soon, but I have gotten used to it and laugh at myself. Not so much at work. I don't remember who I just talked to on the phone. Constant pen and paper on me.

Lynne

[Susan61]

Hi Lynne:  I commented earlier regarding the Chemo Brain.  You mentioned when your tired its worse.  That is so true, and I still think when you have a lot of things on your mind it can make you feel like that too.  I had a crazy day yesterday with just a lot of things to take care of, and I get very forgetful.  This is when I refer to it as Overload of The Brain.  My mail came in, and I opened it as I sat at the kitchen table having coffee.  Then later on I was trying to straighten up real quick.  I picked up the torn envelopes along with all the mail, and just threw it all out in the garbage by mistake.  My garbage got picked up, and then when I could not find all the bills etc I realized what I must have done.  I had to sit and remember what bills came in, and then make phone calls to have them resend everything.  Thank God I could remember the next day what was there.

     I cannot speak for everyone else, but I have a lot on my plate as they say.  Is it my Gleevec with a combination of Overload.?  I speak to friends who are not on a TKI, and they say they are doing the same thing.  They think its just due to all the stress in our lives, especially now with the Economy and trying to make ends meet. We just have to do the best we can for whatever reason we get like this.

Susan 61

[Lynne D]

I totally respect when other people say they have memory issues and it's stress or being busy. I never try to lessen anyone else's problems........out loud. Everyone has their issues, but I would say about 85% of it for us is the Gleevec and 15% is just normal aging and stress. Sometimes I resent when my mom says to me, just wait until you're my age. Grrr. I already feel older than I am. I am not a person who generally panics or scares easy, but when I don't know where I am and I drive it 5X a day, then thats an issue. We do have a lot on our minds. I am trying to work which is a huge problem for me, it gets harder everyday. I haven't spent much time cleaning because I'd rather be sleeping. I get so tired.

I throw stuff away all the time by accident or I put it somewhere that I think I can find it easy and then I can't. Sigh, and it's only a matter of a day or hours. I am grateful to be here, just wish it could be a little easier.