"CHEMO-BRAIN"

chris t
chris t Member Posts: 2
I have recently discovered what I thought was just me, but turns out to be somewhat of an epidemic among cancer survivors called "chemo-brain". I noticed it immediately after my first treatment. I was in a constant state of intense confusion. I had to rely on others to keep my appointments, couldnt remember my age, names, some faces, dates and numbers, etc.. 21 years later, this is still going on, and just as bad if not worse. I've lived my life in a cloud and didn't know how to tell anyone. It is embarassing to say the least of a man who's IQ in high school was 156. I'm still intelligent, I just have troubles putting the pieces together. I have found this to be a major disability and hinderance to any careers I have attempted. In 20 years, I have had over 80 different jobs because I cannot concentrate enough to accomplish the most menial tasks without total distraction. There are no tests that I know of for diagnosis, but there is a drug that helps a bit called Provigil. Other than that, I haven't much hope. I have applied for disability many times and been denied. I'm losing my train of thought right now.....anyway, it's hard to get by without full cognance or whatever the word is I'm looking for. Right now I'm having a Dejavu of having already done this (I get these very frequently, about once a week or more).
If anyone has any answers for me, Please help!
[email protected]
10/13/09
«134

Comments

  • kkkelley1
    kkkelley1 Member Posts: 22
    Chemo Brain
    I am a 5 year survivor. I thought chemo brain was the same as someone yelling "brain Farct" or was just a kidding way of saying your loosing it. It did start immediatly after treatments started and has continued. Not as severe or even close to your experiences. But it is real and it is a real diagnosis, and many have this problem. It mimics a stroke like problem where the words are there but you can't seem to recall them. Short term memory is not like it use to be. I was told to share this with the ones you are most involved with so that they understand and are patient. It seemed to help some but it still remains frustrating. I have not heard of any medical treatments at present but I do relate and do understand your frustration.
  • medi_2
    medi_2 Member Posts: 505
    kkkelley1 said:

    Chemo Brain
    I am a 5 year survivor. I thought chemo brain was the same as someone yelling "brain Farct" or was just a kidding way of saying your loosing it. It did start immediatly after treatments started and has continued. Not as severe or even close to your experiences. But it is real and it is a real diagnosis, and many have this problem. It mimics a stroke like problem where the words are there but you can't seem to recall them. Short term memory is not like it use to be. I was told to share this with the ones you are most involved with so that they understand and are patient. It seemed to help some but it still remains frustrating. I have not heard of any medical treatments at present but I do relate and do understand your frustration.

    chemo-brain
    Hi,I'm a recent survivor and I was told it would go away in time. I agree, it drives me nuts, having a conversation with someone and stopping mid sentence because I realize I've told them the same story recently (I think)...also I seem to have developed ADD...I hop from one thing to another, then get confused and start something else. I sure wish there was something that could help before I become known as the 'Crazy Cat Lady down the street' haha.
    Medi
  • soccerfreaks
    soccerfreaks Member Posts: 2,788
    Brain Salad Surgery
    I have been a member of this site now for four years or so, and in all of that time I have never read of someone suffering chemo brain 20 years after treatment. That, frankly, astounds me.

    Like kkkelley, I learned about chemo brain when it was mentioned to me as a cause for some memory lapses and I considered it a humorous term. I was surprised to discover that it is a most common phrase for what is now a documented effect of cancer patients.

    What I have since found is that the acceptance by the medical and scientific communities that it is a real effect of cancer and/or cancer treatments (chemotherapy in particular) is a rather recent one. As a result, any studies of the phenomenon are also rather recent and would not possibly go back long enough to confirm that the effect can last for 20 years or more.

    The research IS now being done. Some estimate that the effect may last for as long as six months. Others appear to be realizing that it may last for as long as two years. I personally have not read anything that projects beyond that, but, again, the research is rather new.

    In your case, Chris, this having lasted for so long and having inflicted such trauma in your life, I would advise therapy at the very least, perhaps even a visit to a neuorologist. I am no expert, but it sounds to me as though you may have some other things going on.

    Take care,

    Joe
  • mljac
    mljac Member Posts: 3

    Brain Salad Surgery
    I have been a member of this site now for four years or so, and in all of that time I have never read of someone suffering chemo brain 20 years after treatment. That, frankly, astounds me.

    Like kkkelley, I learned about chemo brain when it was mentioned to me as a cause for some memory lapses and I considered it a humorous term. I was surprised to discover that it is a most common phrase for what is now a documented effect of cancer patients.

    What I have since found is that the acceptance by the medical and scientific communities that it is a real effect of cancer and/or cancer treatments (chemotherapy in particular) is a rather recent one. As a result, any studies of the phenomenon are also rather recent and would not possibly go back long enough to confirm that the effect can last for 20 years or more.

    The research IS now being done. Some estimate that the effect may last for as long as six months. Others appear to be realizing that it may last for as long as two years. I personally have not read anything that projects beyond that, but, again, the research is rather new.

    In your case, Chris, this having lasted for so long and having inflicted such trauma in your life, I would advise therapy at the very least, perhaps even a visit to a neuorologist. I am no expert, but it sounds to me as though you may have some other things going on.

    Take care,

    Joe

    Chemo Brain
    I firmly believe in Chemo Brain. I am an 8 year breast cancer survivor and my oncologist told me that the chemo did not cross the blood brain barrier but I disagree. I am a nurse practitioner and when I get in a room with a patient and forget in the middle of a sentence or get off track totally, I just look at them and apologize & tell them that it is chemo brain and we laugh about it. I really think that this is a true thing though, becauase it happens more often than I would like. There are times that I forget areas of driving from point a to point b, (like did I pass that already). It is crazy.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788
    mljac said:

    Chemo Brain
    I firmly believe in Chemo Brain. I am an 8 year breast cancer survivor and my oncologist told me that the chemo did not cross the blood brain barrier but I disagree. I am a nurse practitioner and when I get in a room with a patient and forget in the middle of a sentence or get off track totally, I just look at them and apologize & tell them that it is chemo brain and we laugh about it. I really think that this is a true thing though, becauase it happens more often than I would like. There are times that I forget areas of driving from point a to point b, (like did I pass that already). It is crazy.

    oh, yeah
    I am with you on this one mljac, and if my post seemed to suggest otherwise, then I apologize. I am also a victim of chemobrain and have no doubt whatsoever about its very real presence in our lives, many of us, following chemotherapy, perhaps even surgery and radiation, for all I know.

    I was merely trying to give some history regarding why there is not more known about it at this time. I DO know that the folks who need to know are now very aware of it and trying to figure out what causes it (and what causes it in some people and apparently not in others).

    Best wishes and congratulations on your eight year survivorship!

    Take care,

    Joe
  • daisy366
    daisy366 Member Posts: 1,458

    oh, yeah
    I am with you on this one mljac, and if my post seemed to suggest otherwise, then I apologize. I am also a victim of chemobrain and have no doubt whatsoever about its very real presence in our lives, many of us, following chemotherapy, perhaps even surgery and radiation, for all I know.

    I was merely trying to give some history regarding why there is not more known about it at this time. I DO know that the folks who need to know are now very aware of it and trying to figure out what causes it (and what causes it in some people and apparently not in others).

    Best wishes and congratulations on your eight year survivorship!

    Take care,

    Joe

    What a club!
    I'm in the chemo brain club, too! This combined with my "senior moments" are quite a challenge. At least I have an excuse for my episodes, not like my younger colleagues.

    Well wishes to all. Mary Ann
  • cwcad
    cwcad Member Posts: 117
    daisy366 said:

    What a club!
    I'm in the chemo brain club, too! This combined with my "senior moments" are quite a challenge. At least I have an excuse for my episodes, not like my younger colleagues.

    Well wishes to all. Mary Ann

    chemo brain ?'s
    I do not know if I have chemo brain or not. I had stage iV tongue cancer. I took chemo and radiation together for seven weeks Did not eat a thing for 18 months. Lost 160 pounds. Before going into treatment I was a vigorous, hard working individual who loved to work and did projects all the time. There was nothing not with in my reach.

    Three years later I am 195 pounds, a shadow of my former self, completely exhausted, afraid of my own shadow and have very little respect for the way I am acting. I have lived a life where I usually did what I wanted when I wanted to do it!! Now I do nothing and do not seem to have enough time or energy to get it done each day. Taking a shower tires me out. I do not feel bad health wise. I feel lost, listless, and lethargic. I care but I don't care. The answer to all my problems is "Get over it" but that goes out of my mind and I start all over again.

    Is that chemo brain? Or am I lazy? I am lucky to be able to retire. I was never rich but retirement is something that I thought I would have to learn. what I am finding is that I have found that I am a natural at being retired. Well if a man never does anything that he does not want to do. My question is..."Why do I want to do nothing???" I talk all the time about what I am going to do on Tuesday. Soon it is Wednesday morning and I wonder what I did that kept me from doing what I was going to do on Tuesday. The guilt that I build up in my brain never goes away. Yet guilt does not get me to do anything either. when I do try to do something I tire easily. My strength does not come back quickly either.

    I may not have chemo brain but I sure have something. I am still trying to find normalcy. I had 54 years of what I consider normal. What I am living now is not bad by any means. I am living, I am loved, I am warm, dry, and fed. But to say that this is the norm of my first 54 years would be a lie. Consequently I tear myself up with self recrimination and guilt. Then I don't care and it starts all over. Doing nothing and not having enough time to get it done.

    Is there any one out there that is feeling as I have described!!
  • Teri1960
    Teri1960 Member Posts: 1
    Chemo brain doesn't end...
    I was first diagnosed and had chemo in 1996. Since then I had chemo again in 2006. I now have a third recurrence and WILL NOT have chemo again because I can't stand the forgetfulness. I've had it since 1996. I read a study that said it was temporary. I beg to differ. I think every person is different and the studies they do only list the "typical" results. But it is so very frustrating. Even my best friend of 35 years gets annoyed with me because she'll ask if I want to go shopping the next day and I'll say yes and then forget and go do something else. Sometimes I'm driving and realize I have no idea where I am for a few moments. I feel panicked. Then I realize where I am and it's usually my regular route to or from work that I've driven for years. Doctors used to tell me it was just stress. But after this many years, many of them cancer-free and stress-free, I know there's more to it. Hang in there.
  • KCleaver
    KCleaver Member Posts: 6
    Chris that sounds extreme
    I had a bone marrow transplant 12 years ago with that enormous radiatioin and have mostly joked about chemo brain now that I am 56 - my short term memory is worsening but who knows if its aging or cb. I did find and have a copy of an article, several years ago where they tested breast cancer survivors vs a control group - they could measure how hard the part of the brain responsible for memory was working when the women were asked to remember something they were shown. It was determined by blood flow to this part of the brain. And the cancer patients did show significantly more effort in remembering.
    I have not been looking but I have not seen anything since. I cant imagine you cant get disability - very upsetting.

    I will say I have had to adapt habits, mostly writing things down, since my short term memory started getting weak. But nothing like Chris, my heart is with you.
  • daisy366
    daisy366 Member Posts: 1,458
    KCleaver said:

    Chris that sounds extreme
    I had a bone marrow transplant 12 years ago with that enormous radiatioin and have mostly joked about chemo brain now that I am 56 - my short term memory is worsening but who knows if its aging or cb. I did find and have a copy of an article, several years ago where they tested breast cancer survivors vs a control group - they could measure how hard the part of the brain responsible for memory was working when the women were asked to remember something they were shown. It was determined by blood flow to this part of the brain. And the cancer patients did show significantly more effort in remembering.
    I have not been looking but I have not seen anything since. I cant imagine you cant get disability - very upsetting.

    I will say I have had to adapt habits, mostly writing things down, since my short term memory started getting weak. But nothing like Chris, my heart is with you.

    cwcad
    Chemo brain to me is being forgetful and confused sometimes. I don't know if that is the "official" description or not.

    I wonder if Your symptoms could be DEPRESSION. You might consider seeing a therapist or even take a simple survey which you can get free on line. It's call the Beck Depression Inventory (just google it)- it can be scored and you can check your own level of depression.

    Best wishes to you.
  • cwcad
    cwcad Member Posts: 117
    daisy366 said:

    cwcad
    Chemo brain to me is being forgetful and confused sometimes. I don't know if that is the "official" description or not.

    I wonder if Your symptoms could be DEPRESSION. You might consider seeing a therapist or even take a simple survey which you can get free on line. It's call the Beck Depression Inventory (just google it)- it can be scored and you can check your own level of depression.

    Best wishes to you.

    Thanks for the info!!
    I will do as you say. This site has somehow calmed me quite a bit. I know I had a.." why me episode" but the truth still remains that I am frustrated but not enough to get over it.
  • bluerose
    bluerose Member Posts: 1,104

    Brain Salad Surgery
    I have been a member of this site now for four years or so, and in all of that time I have never read of someone suffering chemo brain 20 years after treatment. That, frankly, astounds me.

    Like kkkelley, I learned about chemo brain when it was mentioned to me as a cause for some memory lapses and I considered it a humorous term. I was surprised to discover that it is a most common phrase for what is now a documented effect of cancer patients.

    What I have since found is that the acceptance by the medical and scientific communities that it is a real effect of cancer and/or cancer treatments (chemotherapy in particular) is a rather recent one. As a result, any studies of the phenomenon are also rather recent and would not possibly go back long enough to confirm that the effect can last for 20 years or more.

    The research IS now being done. Some estimate that the effect may last for as long as six months. Others appear to be realizing that it may last for as long as two years. I personally have not read anything that projects beyond that, but, again, the research is rather new.

    In your case, Chris, this having lasted for so long and having inflicted such trauma in your life, I would advise therapy at the very least, perhaps even a visit to a neuorologist. I am no expert, but it sounds to me as though you may have some other things going on.

    Take care,

    Joe

    It happens all the time with long term survivors
    I am a 20 year survivor and had a bone marrow transplant for NHL and total body radiation and I actually sought out help for chemobrain from a neurosurgeon at a Memory clinic here that does research on Alzheimers and the like.

    He confirmed that he has seen this memory and cognitive function issue with other survivors as well, short term and long term like myself. Short term is very common and long term happens and is recognized now throughout those in the know in the medical field as this neurosurgeon confirmed in his diagnosis.

    Years back they didn't think that chemo crossed the blood-brain barrier but now it's well known that some chemo drugs do in fact. This neurosurgeon explained to me that it isn't exactly damage that it causes the brain but it does weaken the brain slightly so that natural processes like aging are not handled as well in those who have had cancer treatments. And of course it depends on what treatments a person has had and how much, yada yada.

    But yes chemo brain definitely affects long term survivors as well. Blessings, Bluerose
  • slickwilly
    slickwilly Member Posts: 334
    cwcad said:

    Thanks for the info!!
    I will do as you say. This site has somehow calmed me quite a bit. I know I had a.." why me episode" but the truth still remains that I am frustrated but not enough to get over it.

    chemo brain
    I firmly believe in chemo brain. I knew I had cancer for a month before taking time off work. I did my job perfectly fine and I had no memory, speech or multi tasking problems. After my treatments I returned to work and quickly learned I could only manage one function at a time. Things I have always known stayed locked behind doors in my brain. I would start saying something and forget where I was at and start over again. It took months of doing crossword puzzles and pushing my thought process to get things working again. Six years out my memory is still not where it once was so I write things I need to remember down. I believe each patient is different and depending on the type and strength of the chemo there can be different outcomes. The memory lapse can be frustrating and dangerous. I know many people like me that have forgot things on the stove and went off to sleep. Or sat in a parking lot wondering how to get home. I don't feel its a why me deal. Its just the way it is and a price I paid for saving my life. Slickwilly
  • Luna6517
    Luna6517 Member Posts: 11
    Rant about my own experience...
    I have never had a doctor tell me about "Chemo Brain." I learned about it on my own, researching reasons for my trouble remembering things, getting lost easily, being unable to process information given me, etc. This is actually one of my main reasons for joining this community... finding out about other people's experiences with deteriorating cognitive functions.

    I've especially noticed this recently. I've always been teased about my horrible sense of direction. I had to work a lot harder than usual during my math classes my last year of high school and first couple of years of college. I have a very good vocabulary, and even though I know the word and it's meaning, when I'm speaking my brain won't supply me with the word itself. Whenever I don't understand a concept, or someone grows frustrated with me because I need them to repeat themselves because I didn't process the information they were trying to tell me, I don't know whether its because it's just who I am, or because of the cancer treatments.

    I don't like using "Chemo Brain" as an excuse. I certainly don't have as extreme a case as Chris, but I realize that my learning abilities can be hampered by this. I'm having a hard time reconciling what could possibly be a very debilitating learning disability, with laziness.

    I wish I could take every fault, every single aspect of myself that I don't like and put it in a "Cancer" category and a "Just Me" category. At least then I'd know what I should actually put some effort into changing.
  • Luna6517 said:

    Rant about my own experience...
    I have never had a doctor tell me about "Chemo Brain." I learned about it on my own, researching reasons for my trouble remembering things, getting lost easily, being unable to process information given me, etc. This is actually one of my main reasons for joining this community... finding out about other people's experiences with deteriorating cognitive functions.

    I've especially noticed this recently. I've always been teased about my horrible sense of direction. I had to work a lot harder than usual during my math classes my last year of high school and first couple of years of college. I have a very good vocabulary, and even though I know the word and it's meaning, when I'm speaking my brain won't supply me with the word itself. Whenever I don't understand a concept, or someone grows frustrated with me because I need them to repeat themselves because I didn't process the information they were trying to tell me, I don't know whether its because it's just who I am, or because of the cancer treatments.

    I don't like using "Chemo Brain" as an excuse. I certainly don't have as extreme a case as Chris, but I realize that my learning abilities can be hampered by this. I'm having a hard time reconciling what could possibly be a very debilitating learning disability, with laziness.

    I wish I could take every fault, every single aspect of myself that I don't like and put it in a "Cancer" category and a "Just Me" category. At least then I'd know what I should actually put some effort into changing.

    This comment has been removed by the Moderator
  • bluerose
    bluerose Member Posts: 1,104
    Luna6517 said:

    Rant about my own experience...
    I have never had a doctor tell me about "Chemo Brain." I learned about it on my own, researching reasons for my trouble remembering things, getting lost easily, being unable to process information given me, etc. This is actually one of my main reasons for joining this community... finding out about other people's experiences with deteriorating cognitive functions.

    I've especially noticed this recently. I've always been teased about my horrible sense of direction. I had to work a lot harder than usual during my math classes my last year of high school and first couple of years of college. I have a very good vocabulary, and even though I know the word and it's meaning, when I'm speaking my brain won't supply me with the word itself. Whenever I don't understand a concept, or someone grows frustrated with me because I need them to repeat themselves because I didn't process the information they were trying to tell me, I don't know whether its because it's just who I am, or because of the cancer treatments.

    I don't like using "Chemo Brain" as an excuse. I certainly don't have as extreme a case as Chris, but I realize that my learning abilities can be hampered by this. I'm having a hard time reconciling what could possibly be a very debilitating learning disability, with laziness.

    I wish I could take every fault, every single aspect of myself that I don't like and put it in a "Cancer" category and a "Just Me" category. At least then I'd know what I should actually put some effort into changing.

    Trust your instincts
    Hello Luna. I am sorry to hear about your issues with what could be 'chemo brain', I have it as well after cancer treatments (rads and chemo). After reading your post though something stood out to me and that was how you were second guessing what the reasons were for it. It all comes back to trusting your instincts. I have been through this before many times and found that if I 'felt' that something was different that wasn't there before the treatments then no doubt it was due to the treatments - or dern good odds it is. Now you throw into there aging as well and yup that can be it for me too especially since I am almost 60 now and had treatments around 40 BUT for me these issues with memory loss and cognitive issues started almost right out of the first treatments and the cognitive issues are worse now, far worse. Memory is getting worse too in many ways.

    Years back when I talked about this with my oncs they advised psychiatry which made me mad because I knew it was something else, and related to treatments. Were you radiated to the head at all? Even if you weren't some chemo drugs can be responsible so I have been told.

    This is a new day in cancer treatments and research and now specialists do recognize Chemo Brain as an actual issue for survivors, short and long term. I visited a memory clinic for testing last year and saw a neurosurgeon/nuerologist for the results of my testing and he said that they were seeing this in long term survivors and hinted in short term cases as well. He told me that if you are radiated to the head especially then cognitive issues were no doubt a given and that they used to think that chemo didn't cross the blood/brain barrier protective area of the brain but now they realize that SOME chemo drugs do. Two of mine were those drugs. That meeting was soooooooooooooooooooooooo validating for me, I wasnt nuts (well maybe a little now, lol) the treatments were to blame. It isn't about wanting to 'put it all on cancer' at all but knowledge is power for survivors and we need to know why we are who we are today. You are not wrong or blaming anything, you just have instincts and need to know.

    Now of course there is little chance that we can really KNOW any real sources for sure of our issues as there could be a few factors leading to memory loss and cognitive issues but be validated in knowing that the scientific/medical community knows that this condiditon exists. Where once we were looked at with questioning looks when we said 'chemo brain', now they know it's a true state, or can be.

    I have never heard the B12 thing but its worth a shot. The neurosurgeon told me that not much can be done but this isnt' dementia or altzeihmers' so that's big good news however the only thing they found that might help is ritalin (of all things) and antidepressants apparently. So far I don't know if I am interested in either.

    I live in Canada and there is a site here like this one but in the chatrooms there they use them as meetings between their hospital (Princess Margaret in Toronto Canada - a leading cancer hospital here) and survivors. It's unique because you can go to their meetings online at their site, they will email you if you join as to when and what the subject matters discussed will be, and you can attend and ask questions. This Monday Feb 8th they will have 3 meetings at different times, one on radiation questions with a radiation specialist, the other meeting on lymphedema, and the other meeting is on fatigue I think but not sure about that one.

    Here is the site if you are interested in that type of thing, great place to ask questions of experts on whatever field they are discussing that might interest you. This is the site, all are welcome if they even say 'brought to you by the breast cancer community' they are the ones who started the site but they usually are for everyone now with all kinds of cancers.


    http://caringvoices.ca/en/

    All the best, know that chemo brain can be real and be validated in that. Maybe see you at the meeting. Blessings, Bluerose
  • Flakey_Flake
    Flakey_Flake Member Posts: 130
    I Miss Me
    None of my caregivers ever mentionsed any SE of congnitive deterioation. Had I known what I was to go through, I may have declined treatment. As it is I made the choice to fight, and I will fight with all I have.

    Shortly after my first round of chemo (breast c - dense dose A/C) I noticed I couldn't remember things. What little energy I could muster was wasted wandering from one room to the next. I was a sutdent at the time and I would read a paragraph three times to gather what it contained, only to have it empty out of my head when I read the next paragraph. At first I thought it was just fatigue. Then I started forgetting how to do simple things. Write a check, where dishes went, how to use the can opener. This started to scare me. I was like a lost child. I knew I couldn't continue school - it was ridiculous to try. I was very scared and didn't knwo what to do. I called my onc nurse in hysterical tears, trying to telll her what was happening to me. She was actually surprised I had not heard of chemo brain or chemo fog. She said that my onc didn't put must credence in it. I called my family doc, who gave me anti-depressants. They calmed me down a bit, but didn't really do much to change it. Since then I've been put on stronger anti-depressants, B comlex vitamins and prescription folic acid to see if that doesn't help with the memory issues. I have done internet reasearch on chemo brain, but can never remember exactly whst I've read. I keep trying to do things to improve my memory - read, play puzzles, etc. I don't see many poeople. My boyfirend and my son, who simply put up with my repetitions. When I go for treatment my boyfriend always takes me, so I have someone who might remember what was said. I can't find my way from the chemo trestment area to the waiting room with out help, and I have been going there for six months. I am easily confused - sometimes when I wash dishes, I can't decide if I should pick up the cup, or the fork, or what I am supposed to do. I seem to be able to carry on a conversation with friends who call me on the phone, but am always struggling to find words. I have explained to them about chemo brain, and they seem understanding of my recent shortcomings. I am sure there are times I repeat myself, as after saying something it will suddenly dawn on me I said it before. When I email friends and family and there are several messages in the reply, I will read them, and see that I have retold things as though it were something new. The really dumb part is, you never know when or where it will strike. Sometimes I have to ponder for five minutes to remember how to pay a bill online. Sometimes I can just zip right through it. I leave car doors open, food on the counter, dishes half done, I never know what I will find. I scare me. I am afraid to drive, not because I mght hurt myself, or my car - but how would I live with myself if I hurt or killed someone else knowing that I am not at capacity to responsibly control a vehicle.

    If I were an employer I certainly would not hire me. And I have a very good reputation for being a dependable worker, quick to learn and eager to tske on responsiblility. But I am no no longer that person. Will this dissapate over time? Who can say? My family doc at least will acknowledge what chemo brain is, but seems to think it will cure itself once chemo is over. I hope she is right, but there is no guarantee. In the mean time I will continue to be treated for depression, and I am seeing a nuerologist for essential tremors. I am not sure yet what his take on chemo brain is. I will ask on my next visit, but I will not be surprised if he poo-poo's the whole thing. After all, what test is there to confirm or deny chemo brain. Many of the symptome mimic depression. As far as I can remember (HA!) from reading up on chemo brain, there are no distinct markers where someone can say for certain it is chemo brain or something else. In the medical world it seems to be a very subjective topic. I am applying for disability, but will have to try for it on depression, as as far as I can tell SS Disability does not recognize chemo brain either.

    I joke when I can about it, but inside I am crying. I miss me.
  • janimil
    janimil Member Posts: 6
    mljac said:

    Chemo Brain
    I firmly believe in Chemo Brain. I am an 8 year breast cancer survivor and my oncologist told me that the chemo did not cross the blood brain barrier but I disagree. I am a nurse practitioner and when I get in a room with a patient and forget in the middle of a sentence or get off track totally, I just look at them and apologize & tell them that it is chemo brain and we laugh about it. I really think that this is a true thing though, becauase it happens more often than I would like. There are times that I forget areas of driving from point a to point b, (like did I pass that already). It is crazy.

    Blood-Brain
    They are finding now that chemo does cross the barrier, and does cause real frontal lobe edamage. I intend to see a neuro-psychologist for an assessment, and you may want to do that too.
  • I Miss Me
    None of my caregivers ever mentionsed any SE of congnitive deterioation. Had I known what I was to go through, I may have declined treatment. As it is I made the choice to fight, and I will fight with all I have.

    Shortly after my first round of chemo (breast c - dense dose A/C) I noticed I couldn't remember things. What little energy I could muster was wasted wandering from one room to the next. I was a sutdent at the time and I would read a paragraph three times to gather what it contained, only to have it empty out of my head when I read the next paragraph. At first I thought it was just fatigue. Then I started forgetting how to do simple things. Write a check, where dishes went, how to use the can opener. This started to scare me. I was like a lost child. I knew I couldn't continue school - it was ridiculous to try. I was very scared and didn't knwo what to do. I called my onc nurse in hysterical tears, trying to telll her what was happening to me. She was actually surprised I had not heard of chemo brain or chemo fog. She said that my onc didn't put must credence in it. I called my family doc, who gave me anti-depressants. They calmed me down a bit, but didn't really do much to change it. Since then I've been put on stronger anti-depressants, B comlex vitamins and prescription folic acid to see if that doesn't help with the memory issues. I have done internet reasearch on chemo brain, but can never remember exactly whst I've read. I keep trying to do things to improve my memory - read, play puzzles, etc. I don't see many poeople. My boyfirend and my son, who simply put up with my repetitions. When I go for treatment my boyfriend always takes me, so I have someone who might remember what was said. I can't find my way from the chemo trestment area to the waiting room with out help, and I have been going there for six months. I am easily confused - sometimes when I wash dishes, I can't decide if I should pick up the cup, or the fork, or what I am supposed to do. I seem to be able to carry on a conversation with friends who call me on the phone, but am always struggling to find words. I have explained to them about chemo brain, and they seem understanding of my recent shortcomings. I am sure there are times I repeat myself, as after saying something it will suddenly dawn on me I said it before. When I email friends and family and there are several messages in the reply, I will read them, and see that I have retold things as though it were something new. The really dumb part is, you never know when or where it will strike. Sometimes I have to ponder for five minutes to remember how to pay a bill online. Sometimes I can just zip right through it. I leave car doors open, food on the counter, dishes half done, I never know what I will find. I scare me. I am afraid to drive, not because I mght hurt myself, or my car - but how would I live with myself if I hurt or killed someone else knowing that I am not at capacity to responsibly control a vehicle.

    If I were an employer I certainly would not hire me. And I have a very good reputation for being a dependable worker, quick to learn and eager to tske on responsiblility. But I am no no longer that person. Will this dissapate over time? Who can say? My family doc at least will acknowledge what chemo brain is, but seems to think it will cure itself once chemo is over. I hope she is right, but there is no guarantee. In the mean time I will continue to be treated for depression, and I am seeing a nuerologist for essential tremors. I am not sure yet what his take on chemo brain is. I will ask on my next visit, but I will not be surprised if he poo-poo's the whole thing. After all, what test is there to confirm or deny chemo brain. Many of the symptome mimic depression. As far as I can remember (HA!) from reading up on chemo brain, there are no distinct markers where someone can say for certain it is chemo brain or something else. In the medical world it seems to be a very subjective topic. I am applying for disability, but will have to try for it on depression, as as far as I can tell SS Disability does not recognize chemo brain either.

    I joke when I can about it, but inside I am crying. I miss me.

    I Know how You Feel !
    I thought my memory was going and I was losing my mind, until a nurse at the office said it was a result of the chemo and in time it will wear off. I personally Have not seen any point where it has worn off and it has become very frustrating. It seems that although almost every cancer survivor who has had chemo experience it the medical professionals seem to laugh it off
    more research needs to be done in this matter. We all need to push for more research to help this side affect from being such a handicap to survivors !
  • JillyB
    JillyB Member Posts: 50
    Chmoe Brain
    Wow, 20 years later! And I am having trouble convincing my dad it is a real thing now, as I go thru chemo. I am so sorry about 80 jobs! I have no answers for you, but just wantd you to know that I will be thinking of you, and actually, because my dad doesn't quite believe in it, he thinks it's more pain meds, my Cancer Center is sending Federal Newsletter tht is has been recognized as a real thing,and what it involves. If you want, I can try to scan it inot my computer and post it? But my Printer/scanner thingy is on the fritz,so i'm not sure it willl work. Well, enough typos I dont' know how to finish, so like I sais, I have no answers for you, but tons of empathy, and someday, hopefully soon, it will be recognized as a Disability and you will get it. That is just something I know.