23 replies to this topic

[donnadavis]

At one time I was on Gleevec. My counts went up and my onc. doubled the dose. the  brain fog  got  really  bad  along  with  other  side  effects. I  would be  talking  on  the  phone  and  forget  who  was  on  the  other  end. I  couldn't  remember  anyone's  name , people  I  have  gone  to  church  with  for  years  looked  familiar  but  I  couldn't  connect.  The  final  straw  was  when I  left  to  go  to  my  onc.  90  miles  away  and  ended  up  in  another  city. (All  three  of  my  children  went  to  college  in  that  city  and  I   had  been  there  a  100  times!) That  was  the  final  straw.  My  dosage  went  down ,  my  brain  came  back. Scary  Stuff!  What  is  worse  my  onc.  at  that  time  really  doubted  it  was  my  dosage, which  it  was.

[valiantchong]

I think it is real, as after Gleevec, my response to the multiplication table is very slow, sometime could not figure the answer....One may easily test onself....in this,,, what is 7x6 ? = see how fast one response compare to before medication,

[Vandyfan]

Billie, I am close to 60 and in a profession (engineering) where precision and numbers are critical.  I have really had to fight the brain fog since being on Gleevec.  At first I thought it was just age, then I thought it was unilateral hearing lose from CML prior to diagnosis.  Now I am coming to the conclusion that Gleevec, in combination with a mix of blood pressure medications, pain pills, etc., all together are playing a big part in memory problems.   One thing I did was to upgrade my hearing aids so I can focus on the conversation, not on hearing the words.  That has helped.  Second, I try to write down some key words as I talk with a client so that I can stay focused during the conversation and remember it later.   Third, I call people back or email just to confirm what was said. My wife is very patient, and she is having her own memory issues, so we try to help each other to remember names and dates.

[tjjurisgamer2002@yahoo.com]

Many of us know that brain fog is real, and it's refreshing that doctors are finally starting to agree with the patients who have been experiencing it in various forms for years.  From all that I read and seen, it seems likely that there are a variety of factors potentially leading to brain fog.  I also believe that sometimes multiple factors can exist in a person making them even more succeptable to the condition.  Either way, it's a real condition that deserves real attention.

I think that some brain fog is directly caused by chemotheraphy; sometimes directly during its administration and sometimes residually as a result of damage or changes to the brain caused by the drugs used in the chemo treatments.  Studies have shown that chemotheraphy drugs can kill cells not intended, such as those that are involved with basic function and memory.  I also think that some of the post chemotherapy drugs may play a role in creating or making brain fog worse in some people as well.

In addition to the chemical explanations, some of the reported brain fog could be related to other factors such as sex and aging.   Studies show that one reason brain fog sometimes affects women is that chemo can bring about the early onset of menopause.  Estrogen is then reduced and it plays a critical role in the function of neurotransmitters in body and neurotransmitters are an essential part of memory.  Thus, the less Estrogen, the worse short term memory.  Even though I have not gone through menopause, I find that the older I get the more care I must use to remember things.  Even then, I'm not so good at it always which is frustrating.

Age is another factor in some cases in my opinion.   Chronic myelogenous leukemia occurs in all age groups, but it is most prevelant among middle-aged and the elderly.   Certain members of these groups will experience a reduction in their memory as a result of the natural process of aging.  This natural condition would occur regardless of the disease, but I believe the brain fog can be worsened by leukemia and its treatments in these individuals.

Regardless of the cause or causes, at least the medical profession is coming around to addressing the issue of brain fog.  Hopefully, in the long run this condition will be a factor in the types of treatment recommendations made in each person's situation.  For now though, I think it's critical to talk about our experiences, to discuss the issue, and to keep brain fog in the public forum so that it can be addressed and treated responsibly.

[Susan61]

Welcome to our group and for sharing your information with us.  Do you have CML,or do you have a family member who has CML?  We do discuss many things here, and it seems like the brain fog issue comes up quite often with a lot of our newbies on here who do not know what to expect.

You are right, and it is a real thing.  Like I said in my post, if you add stress to what your already going through it just manifests it.

You just have to learn how to deal with it from day to day. Sometimes mind exercises work to help bring back the memory also.

Please share some of your experiences with us anytime.

Susan 61

[eithne01]

Hi Billie,have you ever considered crossword puzzles etc?They are excellent brain exercise.

Also very important are your vegetables especially brocolli.I hope this is some use to you.

God Bless.

[jrsboo]

Hello All,

Brain Fog is real.  I just completed an 8 hour cognitive testing done at the bequest of my Oncologist.  While almost all of my cognitive functions are in the very high range, short term auditory memory functions are only about 1/2 of what my normal rate is.  The neuro psychologist who did the testing said that cognitive rehab can help, and that is being set up as I type.  I should start that in the next couple of weeks.  It was amazingly heartening to hear that it was real, that I wasn't crazy.  She also said that she sees this alot with people who are on or have had chemotherapy.

So they know it exists.

I was also at another doctor's office to have my elbow looked at (hurt that a year ago, and still on pain meds), and he left my file open for me to see when he left the office.  My PCP had written that the patient "claimed" cognitive disfunction, but seemed fine to him. 

ARGH.  It would appear that if the specialist is NOT in the world of cancer, they don't believe you.

Just my two cents.

Caroline

[Marnie]

Hi, Caroline. .

I'll be interested to hear what kind of  exercises the cognitive rehab is comprised of.  Keep us up to date!

Marnie

[jrsboo]

They seemed to test ALL sorts of things. 

1.  They started with who was the president.  Who was the president before him (I actually got stuck on that one, but fear it was more my revulsion of him).

2.  There were word definitions.

3.  There were stories told to me, and I had to repeat back the stories.

4.  The tester read a list of words that were paired with one another (tree-luck, house-coffee, etc), then the tester would tell me the first word and I had to remember the associated word.

5.  The tester read a list of numbers starting with a number with 3 numbers and you had to repeat it back to her, then she would give 4 numbers, etc.

6.  Then the diabolical test, she read a list of numbers and you had to say them back backwards (3479 would be 9743), but you had to hold them in your head. Again increasing the number of numbers till there was 10.

7.  They blindfolded me, put a board in front of me with shapes cut out, and put blocks that fit the shapes.  Then using only my right hand, I had to fit the blocks into the shapes.  Then she took it all apart and you could only use your left hand, then you could use both hands.  Then she put the board and blocks away and then I took off my blind fold and had to draw the board where the shapes where.

8.  The had a set of those old fashion red and white blocks, and you had to match the picture with the blocks to form the picture.  (I'm a quilter so that one was easy)

9.  She showed me a line drawing of shapes, and then took them away, and I had to draw the picture.

10.  I had to tap on a thing like a morse coder, and she timed how fast I could tap, each hand.

11.  There was this bizarre machine that would show me a picture and I had to figure out if it represented numbers 1-4.  The easier ones were circles with a quarter wedge taken out of the top left hand side.  This indicated number 1,  top right = 2, and you had to press a lever to indicate your response.  it made a bell sound if you were right, and a buzzer sound if you were wrong.  the tester was not able to give you any directions about what the pictures indicated or what answer they were looking for.  You also only got one guess per picture.  Some things were so bizarre like a tree, a bird, a clock and a cup.  the answer was 3.  I got it right, but have no idea how or why.

12. They made me take a personality test.

13.  There were word definitions.

14.  There were idea definitions.  One example: why is it important to allow freedom of the press.  My answer?  To allow for the rapid dissemination of information regardless of ideology.  That just popped out.  I apologized, usually I don't use my "big" words, I try to use everyday words to explain ideas to clients, but I was tired.

It went on and on and on.  Some of the tests were repeated multiple times during the day.  I guess to track how long you could hold things in short term memory and when they made it to long term.

It was quite exhausting.  But fun.

Caroline

[hannibellemo]

Billie,

I may have mentioned this article in the current CURE before ( I can't remember ) but here is the link to the digital magazine. They have an interesting article on this subject.

http://mydigimag.rrd...cation/?i=63907

Pat

[tjjurisgamer2002@yahoo.com]

Thank you very much.  I appreciate the welcome to your group.

One of my best friends in China, like an older sister to me, has CML.  That is what drew me to your topics and threads on the website.  She has complained of brain fog and I noticed it some when I get to spend time with her.  We mostly talk on the phone or by internet.  I makes me sad I'm unable to do more or be there to help her more.  At least the more we learn together and talk about it together, the more it's like we are really together.  It's hard to talk about; it's very personal for chinese families to help each other.

Yes, the information on brain fog just jumped out of the page at me when I first was reading the various articles and looking at different parts of the website.  It was exactly what my friend and I were discussing just the past week.  I had also read some articles online at other websites to get some general information, but this thread is full of wonderful suggestions, ideas, comments and stories from everyone.  I think it helps everyone to be able to talk with each other and share ideas and information.

One thing that I think is important, and which was discussed earlier in the thread, that I had not thought of is the danger of brain fog when driving or even traveling alone in the city.  Many secondary dangers can arise out this type of situation.  When I talked to my friend, she was resistant to give up her freedom to drive or travel alone in the big cities.  I imagine that is common.  But we discussed the matter several more times, and she agreed that it could be unsafe for others, not just her, and that she would stop.  I also feel much better that she travels in the city with a friend or group of friends.  It will be safer for everyone and they will be there to help her if needed.   This way she keeps her freedom and has nice company as she shops.

I agree with you about stress and it's role in our health.  I believe that stress and relaxation both affect our psychological moods and overall bodily health.  I also believe that keeping a positive mood can improve the natural healing process and even boost the body's immunities.  Similiarly, stress and poor psychological moods can slow or negatively affect the body's ability to heal in my opinion.  I told my friend that it's important to have fun and be in a good mood, but also to have outlets and people to talk to when her mood is not so good or she is under stress.  That way the negative emotions do not build up and get worse.

Thank you for your welcome, input and advice.  I hope everyone had a happy holidays.

[VickiW]

oh you bet cha' brain fog, or I like to call it~chemo brain~ is very real.  In fact, not long after I was dxd I had a hat made that said "I have chemo brain what's your excuse?" Everyone loved it so much I wound up having a dozen more made and gave them to the local cancer clinic to sell as a Walk for Life fund raiser. (my hubby and I were volunteer chairs that year).  Since going on Sprycel, it took more than a year, but my chemo brain now is a distant memory (I think, hehehe).  I still have occasional "glitches" (head into another room and then can't remember why I went there, etc.) but honestly, I am not sure if that's chemo brain or an attack of early onset "oldtimers'"

Seriously, the question of stress causing brain fog?  Not in my case.  I am seldom under stress.  Even after dxd because I was just thankful I was still alive (I honestly overheard my onc consulting with another Onc on the phone outside my exam room shortly after dxd say quote "yeah, I don't know why she is still alive either") and I had major chemo brain (aka brain fog) so bad the first year the nurses would get tired of repeating instructions to me and started carrying post-its.  I still have huge holes in my memories from not only that year but the year before.  I refer to my current memory as Swiss cheese and I count heavily on my hubby to fill in the blanks when I "fall down a hole"

[rocker77]

Brain fog is real. I have very little stress right now and I have noticed a major decline with my short term memory. This year I am constantly misplacing things and have no recolection where I put them. No memory at all from a person with almost photograhic memory.

[Marnie]

Hi, Billie. . .I've been out of touch for awhile.  In a bit of a stressed-out funk because my school district will be changing insurance plans which will have a seriously crappy effect on my finances.  Worse even than the nastiest sharts.  I need to start dealing with it, but need some time away from it first.   I am not looking forward to finding a new doc, dealing with pre-authorizaion (yet again!), figuring out delivery of meds, which is always a freaking pain, dealing with tax implications (can't believe I have to deal with that, as well).  And big out-of-pocket bucks in September.  Then, in another 3 months, I get to either have another huge hit on my pocket book, OR I need to switch to hubby's insurance plan, which means paying the premium and going through all of the above a second time.  Sigh.  I'm supposed to be on vacation.

Sorry. . .I try to stay away from the "feeling sorry for myself" routine, but I've been running on fumes for awhile, and the school year ended on a really sour note.

I have zero tips for brain-fog-induced-spelling.  I find myself under the same spell.  This year, the kids have found spelling errors when I'm writing on the board.  This is not good.  I also seem to be grasping for words a lot.  I know the word. . .I can feel it in the back of my mind, but I just can't spit it out.

AND. . .to top it all off, I am sick and tired of my only Sprycel side-effect. . .bad gas.  I don't think I can qualify for disability retirement on that.

O.k.  I'll quit whining now.  It's just been a very rough couple of months and the insurance thing is weighing on me.

Marnie

[JP1102]

... is Brain Fog real?! ... ahh ... Damn, what's the topic again?

[Taylor]

I've definitely noticed some in the language department.  I've really concentrated this as I am a writer for a living and my degree was in Linguistics.

I have noticed that if I am trying to describe a story verbally it gets hard for me to keep up with what I'm saying and my train of thought gets derailed a lot.  Also, when writing, my spelling isn't too poor, except I have a lot of silly little typos--such as writing "have" instead of "gave", or I might use the wrong verb tense.  It's pretty frustrating at times.  I haven't been sleeping well the last month or so, so that could make a difference.  I think I'm back to sleeping well so I hope in a few days I notice improvement, because that's a big factor.

[jrsboo]

I noticed, the other day, that I am speaking slower, just a tad, and that allows me to hunt for the word a bit before I get there and need it.  If nothing else, I am the queen (or perhaps princess) of coping mechanisms.  But I still use the wrong words,  today I substituted "hate" for "have".  Really changed the meaning of the sentance. 

Spelling is still ok for me, as is grammar (but law school burnt that pretty hard into our little soft brains).

Caroline