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"CHEMO-BRAIN"

chris t
Posts: 2
Joined: Oct 2009

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!
ctheibault@yahoo.com
10/13/09

kkkelley1's picture
kkkelley1
Posts: 22
Joined: Oct 2009

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's picture
medi_2
Posts: 506
Joined: Aug 2009

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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
Posts: 3
Joined: Oct 2009

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
cwcad
Posts: 117
Joined: Nov 2009

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!!

janimil
Posts: 6
Joined: Feb 2010

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.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

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

Teri1960
Posts: 1
Joined: Nov 2009

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
Posts: 6
Joined: Nov 2009

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
cwcad
Posts: 117
Joined: Nov 2009

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.

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

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

brian50's picture
brian50
Posts: 17
Joined: Feb 2010

Hi K Cleaverm,

I too had a bone marrow transplant 24 years ago at the age of 26 years for acute myloid leukameia.

No problems until about 10 years ago,I started getting very bad headaches that could last up to 3 days I tired easier and my short term memory since then has gone downhill fast. I can hardly remember what I did yesterday.

I am not complaining as I have had a happy, busy and successful life since my transplant.
I started my own buisness 15 months after my transplant and ran it for 10 years.

I am still in full time empoyment ,have never been out of work since leaving school at the age of 16 years and I celebrate my 50th birhday this weekend.I met my wife Shona 10 months after my transplant we married nearly 16 years ago and a year later our Jason was born.
I had sperm frozen before my transplant and it was used for this 8 years later. I count myself lucky in life not unlucky.

Luna6517's picture
Luna6517
Posts: 11
Joined: Feb 2010

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.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

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

GogolBordello's picture
GogolBordello
Posts: 11
Joined: Apr 2005

I started taking Vyvanse and it helps
I still have an incredible memory, sometimes short term is lapsed and stinks.
Retention is my problem now, I have to really work at new information.
I've never used it as an excuse and always push myself, even if I work an extra few hours a night.
My cube is peppered with notes and docs to be right in front of me, I created a system where I type out key points and then put them into documents and post them up, I will rewrite things, basically just copying them into a new document.

I always carry a Moleskin with me and a pen. :)

Flakey_Flake's picture
Flakey_Flake
Posts: 130
Joined: Jan 2010

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.

SurviveCancerCher's picture
SurviveCancerCher
Posts: 13
Joined: Feb 2010

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 !

AKAngel's picture
AKAngel
Posts: 74
Joined: Mar 2010

When she finally mentioned to her oncologist that she was having trouble remembering things(after about her 3rd treatment), he mentioned 'chemo brain'...and her nurse that she was having inject her with chemo said the same thing. The chemo just kills off the brain, but no explanation why or how come was ever given. We try and laugh about it here, how she always thinks every other day is Saturday or when she says a word backward, like "rock-croaches" instead of 'cockroaches'..but I know it bothers her that her brain isn't what it used to be. She hasn't had any chemo in her system since January, but her doctor never told her that she would recover from this random memory loss. And now that she is considered a 'terminal' patient, she has stopped bothering to ask about it. My dad and I just try to be as patient as we can with her new disability and tease her that we hope it's not catching. As I said, we try to turn it to humor so she doesn't get as upset and get down about it. Good luck with SS, they seem to immediately deny regardless of the reasons why you're applying the 1st time as policy...several relations of mine have had to wait a year or more to get things resolved with them. But maybe this time you'll have better luck. Hugs to you, and strength.

lilac08
Posts: 6
Joined: Aug 2011

I miss myself so much. I am different now.... My oncologist denies "chemo brain " I told the dr I disgreed with her. My neurologist , Finally agreed with me. He said the chemo changed my brain. Short term memory problems..... concentration problems.... and just being ME. I do understand a little of what you are going through.

JillyB's picture
JillyB
Posts: 50
Joined: Feb 2010

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.

kkkelley1's picture
kkkelley1
Posts: 22
Joined: Oct 2009

My extended family had a hard time and still do, in fact I find that more people than not have a hard time understanding. Those things that are not understood are looked at with doubt. The people I most wanted to understand seemed to react as if it has to be the medication, we're all getting older or that ok if you say so attitude. They are loving but they believe I could start or stop this if I wanted. It is so frustrating to me to be fighting this anyway. I cornered my doc and said HELP with some of these leftovers He actually FINALLY TOLD ME the med field does not know how to fight this yet. It has not been that long that we had to aqcknowledge this is a real diagnoised med condition that is not only real it has been scientifically proven. We as survivors made the world look and see that yes we are eternally grateful for haven been spared life but there is some major side effects, leftovers that are LEFTOVER and for the world and especially the med field to act now that, its not just in our heads (ha, ha) or, instead of complaining, wich none of us are. we're trying to figure how to live with it, we don't feel sorry for ourselfs, and it is not the medicine we're on now. I am different now than I was before treatment. It is up to all of us to keep making the world aware and fight to find coping mech. Then at least the survivors in the present will have a way of dealing with this because all of us never gave up.And survivors to come will maybe not even have to deal with this paticular leftover.
friends Thank you for risking and helping me feel strong instead of feeling insecure!

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I just read a comment on this board in response to what you were asking about chemobrain and had to respond.

The person stated that they never heard of a person who 20 years after treatment has had chemo brain and that is just false because I am one of those people. I have chemo brain and cognitive function issues on and off and I am a 20 year survivor of non hodgkins lymphoma after having a bone marrow transplant and total body radiation. I suffer from many of the things you describe and then some but I want to add here that no two cancer survivors are never the same so what one has others may certainly not experience, too many different variables. I have also talked to many survivors who are longer term and still suffer from these issues as well.

I actually went to a Memory Clinic in one of our big hospitals here in Canada and saw a neurologist who was very familiar with the term chemo brain and assured me that it wasn't just me and that they were seeing this now with many other survivors like me. There is certainly a memory issue right after treatments but for some as years go by this does get worse and I am a living example and as I said earlier have talked to others as well, some longer and some shorter survival times than mine.

Years back they thought that chemo drugs did not cross what they call the blood/brain barrier but now they know that SOME chemo drugs do, not all is what I was told. Also radiation can have an effect on issues if the brain is radiated. It was described to me this way. It is not exactly a damage to the brain perse but the brain is just somewhat 'weakened' by some of these treatments so that normal processes such as aging for example are not tolerated as well in someone who was treated as opposed to someone who was not with chemo and radiation.

This information all came from a neurologist/surgeon who deals with Altzheimer patients and other brain disfunctions in his specialty. I think there is alot to yet be learned about the ramifications of treatments for cancer but it all comes down to the bottomline doesn't it? Weighing options - life vs side effects that are possible down the road.

When I asked this specialist about possible treatments for chemobrain he said that there was some success with antidepressants and since I have spoken with on person on this site who has tried that and for her it clearly worked quite well. The specialist also said there were some studies done saying ritalin could be of value as well. Of course you have to speak with your doctor about what he/she might think of all of this based on your own personal situation with your health and treatment plans.

Remember though EVERYONE HANDLES TREATMENTS DIFFERENTLY. Don't think that just because I or anyone else has had this happen to them that automatically you will have the same experience. No two people are the same and no two cancers are the same and no one responds or is affected exactly the same way as someone else.

All the best.

Hope this gives you some further information that might prove helpful.

Blessings.
Bluerose

kkkelley1's picture
kkkelley1
Posts: 22
Joined: Oct 2009

Dear Flakey Flake,
I loved how you said "I MISS ME' that could not of been said better. Thank you.
kim

yarrowoman's picture
yarrowoman
Posts: 1
Joined: Apr 2010

it has been 20 years for me and i still have severe chemo brain. i too had a high IQ and 3 Masters degrees. soon as the chemo was over it was a whole 'nuther brain. trouble reading and comprehending books ..... imagine, i zoomed through 4-5 a week before! lots of mental confusion vis a vis milk in the oven, sneakers in the freezer ...slow processing speed, and the brain fatigue.........i also have fibromyalgia which has a cognitive component they call "fibro fog" so maybe that is what gives me a double whammy...also diagnosed after chemo. i have been on disability and was recently terminated so i have been doing a lot of research on chemobrain for my appeal. amazingly experts are starting to listen. my cognitive defects have consistently shown up in neuropsychological testing and also in SPEC imaging scans taken a couple years after chemo. i haven't had a very normal functional life since chemo and provigil has helped me a lot too, but no cure. i have found taking coQ 10 and omega/fish oils to be very helpful in helping my brain be less cloudy. I found 3 major researchers who have written books and data and read about some newer PET brain scans that seem to substantiate the brain changes. i think they have to be specialized scans...my onocologist says....i am patiently researching that now....
google these names: Dr. Daniel Silverman, UCLA
Dr. Stewart Fleishman, Beth Israel Med Ctr. New York, NY
Mark Noble, U of Rochester

they have contributed significant data toward this problem. we do need more.....in the meantime...can someone make the login password easier for me to remember? ; )

5381godwin
Posts: 3
Joined: Jun 2010

Hello, I myself realized I have chemofog. 3 year survivor, post bmt, AML. Can I ask how long you were on SSI before they stripped it from you; I am appealing their decision to take mine away. Also how has your blood work (CBC) been all these years? My blood work have been low (rbc,wbc,hematocrit,hmg;3.19,3.79,34.6%,11.9 respectively).Did your onco send SSI a letter or was he/she capable of reversing the denial from SSI? Some information I came across states that anemia may play a significant role in memory and cognitive ability. TRUST IN GOD.

babalonliz
Posts: 1
Joined: Oct 2010

I just joined this site and can so relate to you. I am 58 though and because of my age and past job as a Nurse Practitioner SSDI did grant me disability mostly on the cognitive problems I had documented on neuro psy testing. I hope you are still out there as I would like to know if you were able to get disability awarded again since that is my greatest fear...having it taken away and my not being able to go back to work at the only thing I knew how to do.
lizgage@msn.com

osteo_survivor
Posts: 5
Joined: Mar 2012

THank you for your post...I had cancer at 12 years old, and 2 years of chemo (adryomyacin, cisplatnin and high-dose methotrexate-sp?) plus a limb-salvage, and all this left me in a whirl-wind. I was only a child, with home life problems as well, so I never had the proper support or ability to understand what was happening to me. I had memory lapses so bad that I thought I was having a mental breakdown, and my short and longterm memory had deteriorated to such a scary point that i couldnt remember enough to explain what was happening to me. I am many years out, and so, now have the luxury of hindsight, and I can see that stress (chris this may be important for you) perpetuated the "episodes" tenfold--as it does to this day. I still have very frustrating cognitive issues, health as well, but after 15 or so years, I can see a marked improvement in my brain function. I think the biggest contributor to this rehabilitation has been my decision to go back to school, and the effort I have put into studying. This is such a catch-22 though. I have been taking math classes consecutively for almost 2 years, and in that time my memory has improved more than it has in the previous 10 years. Although, I have had to put in 3-4 times the effort of the best student in class-- to do well--and I come from a highly educated and intelligent family (PhD's on both sides). I used to be very good at math, and now find my ability to learn new concepts (in any field really) to take much repetition and careful reading. I may reread a passage in a book, or ask someone to repeat a statement one or two times. I need much more practice to "grasp" concepts that should come easily. My professors are very kind but at a loss as to how to help me.

The years of having issues and problems, that were not forewarned by doctors, has been difficult. I have been so embarrassed by my "episodes" and inability to recall words during a conversation, but I have also felt so alone and distraught not knowing why my life felt so difficult since chemo. I have some difficulty from the surgery, but when I am doing well, cognitively, I feel...normal. yes, I get glimpses from time to time, where I remember what It was like to 'be' in the world, before chemo. The "chemo Brain" makes me often feel like I am mentally elsewhere, and I can t just be present and enjoy what is going on around me. I have found some relief in a few of the MANY things I have tried over the years. Some of the things I believe have helped with the rehab are: exercise, regularly; eating a diet of unprocessed food (or as close as possible);
interestingly...taking niacin (starting at low doses and moving to very high of the flushing kind) after exercise and sweating in the sauna--I at first I felt as if I went through a round of chemo again, but after a few doses, I felt like chemicals had been purged from my body; Vitamin and mineral supplements--I take extra magnesium, I haven't figured out an exact does, I just "feel it out." Also, acupuncture and Qui-gong (same type of thing) helps my concentration and overall well-being. I think it just helps with stress management, which is a huge factor in how my memory and cognition are functioning.

I am so relieved to have this validation. I just found out last-night. I cried before I went to bed, as I read all of the acknowledged symptoms on the ACA website. I was only warned about a few issues that could arise when i did treatment 15 years ago. Athough, to be fair, 15 years ago chemo was just starting to have marked success in treatment. I am reading 'The Emperor of All Maladies: a biography of cancer" which has been an incredible educational journey about this disease. I recommend every cancer survivor read it. I am studying Molecular Biology, with the hopes of furthering cancer research, so this insight as to how/when/why discoveries were made is invaluable...also, as a tool for my own healing. With treatments and successes as new as they are, it has been hard to navigate my way through the years following diagnosis...like the phantom pain many amputees suffered with silently, until after wartime, it was discovered that these patients ere not crazy--there is a neurological effect to loosing a limb. I believe now that we are the fist generation of patients suffering from symptoms, that are just now recognized, that will hopefully documented and studied for the next generation.

I still struggle each day, and draw my strength from the drive to see that other's lives don't end up with years post-chemo as difficult as mine. I read on the ACA website that there are drugs (used for ADD and those to tread Alzheimer's) that may help. has anyone tried them? I find navigating the medical system with a not well documented diagnoses (or in my case 10 years ago, not documented at all) as "Chemo Brain" is, has been a nightmare. I am also hoping to get some insight from folks on how to broach this with my doctors, so I may get the help I desire--and preform at the "normal" level of my classmates. I am an excellent student, with great determination, but I tire easily, and spend--sometimes wasted--hours studying, only to find myself staring at a test and trying to recall where to begin. Or, getting half way, and forgetting how to continue....and for chris, in extreme cases, I have taken tests, failed, and not remembered taking them :( this rarely ever happens anymore though.

Thanks for listening to my rambling. I have waited for 15 years to let this out.

Maggie

rathgirl's picture
rathgirl
Posts: 147
Joined: Jun 2010

wow. reading everybodys comments about chemo brain explains a lot of things to me! i thought it was just me too. ok and now i know what to kinda expect in the future too. thanks!

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I have a new normal these days and that's ok. I did have chemo brain and still have what I like to call episodes, then there are the days when I look at my hubby and say..........you did NOT tell me that.

LOL.

I for one hope the very bad days stay away.

sea60's picture
sea60
Posts: 2601
Joined: May 2010

I thought it would go away but I still struggle to remember words sometimes in mid-sentence...how embarassing!

Blessings,

Syl

lonestargal
Posts: 1
Joined: Jul 2010

Chemo Brain...so that is what it is called. It has been 7 years since my Mom had any chemo. We started noticing some behavior and personality changes about a 1 year after her last treatment. Looking back there were probably some things going on, but she hid them well or we just didn't notice them. My mom is NOT the same person. Her personality is completely different. I have even spoken to Dr's about this...they did some cognitive testing, but I honestly think they don't believe me. They aren't around her enough and she is very manipulative when she wants to be. She has had MRI's for other health issues, so there has not been a stroke. She is on anti-depressants since my dad passed away 4 years ago. Alot of the behavior issues started before he passed away, so I don't think it is all due to depression. Her dr started her on weekly B12 injections as she was very deficiant, and they did bring some improvement. But it is still really hard. She is only 68 yrs old and we have had to take away her ability to drive a car and she still has many days of using very poor judgement concerning her activities around the house. I think I will do some digging around online and arm myself with some information and go back and see her doctor. Has anyone heard of any treatment that has shown any improvement with the memory or behavior changes?

Thanks so much for listening!

EJmauldin
Posts: 12
Joined: Jul 2010

I don't know how many times I stand there just trying to say something, knowing what I want to say, and the words will not come out of my mouth.
I didn't know chemo brain was real.
I thought it was just me.
Now I am falling apart. Arthritis, chemo brain, what next?
I can laugh at it.
I get confused easily too. I will mix up days.

I was always good at knowing where everything is, now I write down alot of things, I have to check the calendar all the time. I have payed bills twice, and still don't remember paying them. I double check my bank account so it dosen't over draft. Hopefully this won't last to long. It's hard to let other people have control over my life, remind me what I need to do today, or did you do this yet?
So far I keep it all going. I just notice every once in awhile I am mixed up. Thank the good Lord I have a great family and friends that help me. (keep me straight) They don't let me go wrong, and call me to make sure I've done what I should have. I have had less problems since my 2nd round of chemo treatments has been finished for 2 months.

Thank you all so much for sharing this, It helps to know others are having the same
problems.

Eileen

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

I am two years out from my last chemo treatment.

I, too, have trouble remembering/getting words out
My cognitive abilities are less than they were
I actually forgot my address the other day - the address that I've had for over 5 years !!! (that was embarrassing/scary/frustrating)
My short-term memory is shot
Etc., etc.

I've had medical professionals laugh when I say "chemo brain", like I was making it up.

I've actually forgotten what else I wanted to say, no kidding - argh.

Love,
Cecile

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

Chemo brain is very real. i have it but it is getting better. so there is hope!!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

According to the American Cancer Society:

"Yes, chemo brain is real, but its cause is unknown. How often it happens, what may trigger it, or what can be done to prevent it, is also unknown.

Research has shown that some cancer drugs can, indeed, cause changes in the brain. Imaging tests have shown that after chemotherapy, some patients have smaller brain size in the parts of the brain that deal with memory, planning, putting thoughts into action, monitoring thought processes and behavior, and inhibition.

Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. They affect daily activities and need to be researched further.

Pictures of the brain have shown changes in the brain activity of breast cancer survivors treated with chemo when compared with those who were not treated with chemo. These changes were still seen on scans 5 to 10 years after treatment stopped."

http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/ChemotherapyEffects/chemo-brain

kkkelley1's picture
kkkelley1
Posts: 22
Joined: Oct 2009

I am 5 yrs post chemo. I can honestly say that this year has been the least stressful. Is it because the chemo brain has gotten better or is it because I don't fight it as hard or care if I hide it any more. Does it really take 5 yrs for them to regulate the medicines I've been left to take. Have I gotten better from all the side effects chemo leaves you or has God just blessed me with acceptance and the ability to move on. I can't tell you for sure which one it is BUT I can tell you that at 5 yrs I have become more comfortable. At least today.
So don't give up hope.
kim

VickiSam's picture
VickiSam
Posts: 8292
Joined: Aug 2009

California .. there is 'no' such thing as chemo brain. Sad ...

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

VickiSam? One question? Does your Oncologist know how to read? lol. Sheeesh. There is all kinds of data out there now that says it does plus a bazillion cancer survivors that know it's true as well.

I mentioned this earlier on this subject but I was having such a hard time I went to a Memory Clinic at one of out big hospitals here and had tests run by a neurosurgeon and while I was okay for early dementia and altzheimer's (whew) I was showing signs of short term memory loss and confusion. Here is the really interesting part, I thought. This neurosurgeon said that years ago the medical community thought that chemo did not cross the blood-brain barrier but NOW they know that some chemo drugs do. That is what can promote 'chemo brain' issues. He said that it's not really damage perse but rather it's a weakening of the brain (sounds like damage to me but anywho). He said that how I should look at it is that if a brain is hit with chemo that does cross the blood-brain barrier then natural rythyms in life like aging take a greater toll on a chemoed brain than it would on a brain that never was 'chemoed'.

This neurosurgeon also said that they are seeing quite a bit of this 'chemo brain' (that he had no problem acknowledging' in long term survivors of cancer who had been treated with these same chemo drugs. I thought what he said dovetailed with me totally. You don't have to be a long term survivor to notice differences though, earlier you could have memory and cognitive issues too but most pass them off as just a once in awhile thing but in fact later on they will realize it was all leading up to more significant memory and cognitive issues.

I think you might need a second opinion on this if you are interested in being validated on this topic. We know out own bodies and we get hunches that if researched often will prove that we were right all along. I remember seeing a rheumatologist who blamed all my pains on 'having to go through cancer' - sheeesh. I asked for a second opinion and went to see another rheumatologist who spent 2 hours with me, the first one was in for 5 mintues by the way, she ran tests, had me see other doctors for various things to help her diagnosis and she came out with 3 diagnosis for me, well 4 really. One was 'you're not nuts', that was a helpful one because I told her that I felt like that after I saw the first rheum. The second diagnosis was fibromyalgia, 3rd was osteoarthritis and 4th was bursitis. All very painful and obvious diagnosis to her.

Finally VALIDATION.

Blessings kiddo,

Blueroses

TTown Woman
Posts: 1
Joined: Mar 2011

Since I've been back to work, my supervisor and a couple of co-workers are using my chemo brain issues against me. It's hard enough and now to deal with this is taking a toll on me. Has anyone else dealt with this? What did you do?

Rcolenick
Posts: 1
Joined: May 2012

I found out I had cancer Oct 1991 Just days be for my Daughter turn 2 I went through 8 course of Chemo and radation I was ok for 4 months and it came back so by the time my Insurance and all the test I need for City of Hope I went through strong doeses of Chemo to get ready for stell cell and bonemorrow transplant in 1994 I went back to work untill 2001 I got so bad with remember things even with wrighting things down I would still forget to send patient there food request and or giving someone an message some of the co workers would give me a hard time but know where as much as I was doing to myself because I did not unstand what was going on. I had other problems like my feet and heart that was also from the Chemo I went on Disabiliy 2001. But I still was having a hard time remembering right after I just said something my family and friends teased me I did not think it was funny and it hurt when I found the artical about Chemo brain I let people read it if I was still working I would of let them read it to.

rooneyj's picture
rooneyj
Posts: 4
Joined: Mar 2012

According to my well known oncologist in Portland Oregon - there is also no such thing as chemo brain. I miss myself. I miss my life and my connection to others. I don't laugh as easily - 'cause I don't get the jokes very well! I get tired and overwhelmed easily. I spend way too much energy trying to be "myself", and to function adequately at my job. Post it notes, and my cell phone serve as my memory - but the amount of errors I make embarrass me. I am a teacher and have created systems to catch my errors - student files of homework for those assignments I grade, but don't put in the grade book, my cell phone, post it notes, and a large dry erase board. But the stress of trying to do a good job with my funky brain is taxing, as well as dealing unhappy students when I make errors. I felt chemo disconnecting me from myself from the beginning...told my best friend that "it feel like it's disconnecting me from God". I have had chemo 2 1/2 times and still have cancer...don't know if I would be willing to do chemo again - I'd rather be dead than an empty shell. Recently heard that ritalin type drugs can really help - anyone with experience with these?

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I can relate to your memory issues. I'm NED post treatments ended July '09 and still have memory issues. I rely on post-its and writing things down as soon as need to, otherwise, it's gone. Even walking down the hall with a thought to do something.....if I don't write it down NOW, it's gone.

In my local paper 2 weeks ago there was an article by researchers at Washington University, St Louis. Claim chemo brain is real and can last up to 5 years after treatments have ended. It did not mention if have multiple rounds of chemo, and what that might do to one's memory. Luckily I'm no longer in corp world, but if I were I'd be a mess.

Ritalin? Not sure if I'd take it as adamant about any drugs, but if it helps your memory surely worth looking into.

Best to you,
Jan

jjaj133's picture
jjaj133
Posts: 857
Joined: Mar 2011

Thank goodness I found you all!
I finished chemo Feb/ a year ago. I am retired, but decided to get my Realtors license. I self studied and almost blew my brain out. It took me so long. I talk and the words disappear. I just go blank and people look at me like, " Well?"
So embarrassing. I figured it was age but I am active, read a lot, & keep my mind challanged. Now I am sure it has more to do with the chemo. And i am facing the possibility again! They are going to have to put a chip in me in case i get lost!!!!
Prayers to to all of you. Judy

sylvevl
Posts: 1
Joined: Apr 2003

I thought I was alone in this!

I am a 20 year survivor of childhood cancer. I'm only 30 and I can't remember anything. I forget major appointments and words drop out of my head mid sentence. It's been happening for as long as I can remember. (Pun totally intended.)

I had the following chemo drugs: Adriamycin, Actinomycin, Cytoxan and Vincristine. Any information about these and proven memory loss.?

I think what frustrates me most is that my husband "wins" every argument because I can never recall specifics about anything! That really sucks!

I'm not happy you're all in the same boat, but I'm happy that I'm not drifting alone here. =)

Scoop13
Posts: 1
Joined: Jun 2011

Hello, I've just signed on to this and appreciated all the posts.

I seem to have many of these issues as well, although at times it seems like it peaks and swells.

I know I had Vencristine, Cytoxan sounds familiar, and definitely had Cisplatnin (sp?)

Always feel better no matter the symptoms after a Scan comes back " No change"

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I experienced acute chemo brain during and after my chemo treatment. Fortunatley, I was able to avoid extreme symptoms, but I did lose my ability to multi task and for awhile I had a lot of trouble thinking of people's first names. I could think of their last name, but not their first. Odd.

Those symptoms went away, but over the last week, 19 months after chemo, I've just started transposing numbers. Not a lot, and I seem to realize it after I do it, but it's there.

I have been working extensively with a naturopath during and after treatment. She tells me there is acute chemo brain, which you experience during and somewhat after treatment, and there is chronic, which can develop up to 5 years after treatment. Yippee.

She says that most doctors say it is untreatable, but she has some tools to address it. Right now I am starting large doses of glutathione 3 times a week. I have been receiving one large dose weekly via IV since just after my first chemo. I get high does vitamin C and nutritional IVs weekly. But she says to address this, I need three doses of 1,200 mg of glutathione per week. I will take two large doses orally and continue to get the third with my IV. To take it orally, it needs to be in the form of liposomal glutathione. I'm taking the Quicksilver brand. Tastes AWFUL, but I've been through worse.

She says that if this doesn't do the trick, the next step is taking acetylcholine, which is a neurotransmitter that also helps with Alzheimer's. It remains to be seen whether any of this works for me, but I've learned that my naturopath knows a whole lot more about how a body works than many doctors.

As far as chemo not crossing the blood brain barrier, I don't buy that reasoning at all. I have learned that if you have leaky gut, you have leaky brain. Leaky gut is caused by physical and/or mental stress as well as diet. One big dietary factor that leads to leaky gut in many people is gluten. I can't imagine that many of us did not have a leaky gut once we were subjected to treatment. Talk about a stressor to the body. I recently started taking GABA because I was having trouble sleeping. I felt almost instant releif once I took it. My naturopath told me afterwards that if you get relief by taking GABA, you have leaky brain. The GABA molecule is rather large and will not make it into the brain if it is not leaky. Looks like I still have plenty of work to do.

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