CHEMO BRAIN

RE

CHEMO BRAIN PAST AND PRESENT
Submitted by RE on June 26, 2009 - 12:17am

For those of you who do not know me I am 52 years old and have been fighting cancer since 1997, during which time I have had a total of 28 rounds of chemotherapy. I have heard a lot about “chemo brain” (memory problems, difficulty concentrating, trouble putting your thoughts into words etc). I know that while I was in treatment I had difficulty with chemo brain and it could be quite frustrating. To help combat this I kept a note book that I would jot things down in as reminders which was actually quite helpful. Eight year’s passed without cancer, until 2007 when it returned and I had to have 4 more rounds of chemotherapy. That said let me tell you that I still have what seems similar if not the same as chemo brain, my husband always tells me its just an age thing and has nothing to do with chemo (good thing I love this man, hmmm). Anyway, I was kind of buying this idea that age was my problem and not chemo related problems until last night. You see last night my husband turned on an old movie he had T-Voed for me that had Tommy Lee Jones in it (he knows I like Tommy Lee Jones). I settled in to watch it and was totally enjoying the show when he asked me if we had seen it before. I NEVER forget a movie I have seen before, often times I can tell you if we have seen it just a few moments into the show, we were two thirds of the way through it when he posed his question. I told him no, it was not one we had ever seen before and I went back to enjoying the show. Soon I noticed a perplexed look on his face, he asked me do you recall that scene, I did not. He seemed sure we had seen it……it then dawned on me and I asked him what year did the movie come out. It came out in 98, in 98 I was in the midst of enduring 18 harsh chemo treatments for stage 4 breast cancer along with 16 weeks of radiation treatments. I was stunned when I came to the realization that I have lost all memory of ever viewing this movie….what other memories have been lost, this is quite unsettling to me. I no longer believe that my lapses of memory or my inability to voice the words in my mind are “old age” at 52 (thank you hubby :-) ) I am now more convinced than ever that it is a result of my treatments.

zahalene

I was in active treatment for breast cancer for 4 years (1986-1990). Chemo, rads, then being put on tamoxifen.
During that time I did not notice extreme problems with memory function. However, one day a few years ago, long after all treatments and tamoxifen were done, I was looking through some old photos. There was one of me, wig and all, on Christmas morning holding up a g i f t I had just opened. I realized that I had absolutely NO memory of that Christmas at all. It wasn't that it had run together with other years either, because the tree was in a different room than we usually used for it, and I was wearing clothes I do not remember (I was dressed and we ALWAYS did Christmas morning in jammies and robes!). It was the weirdest feeling in the world to see myself in a time and place that I have absolutely no memory of.
I also wonder what else I have lost. And wish I had lost some things that I didn't...lol. Anyhow, now I am 61 and can blame memory loss on age if I choose too, but I still keep my 'chemo card' up to date and use it whenever it makes me feel better than admitting I am just getting OLD! LOL
God bless hun.

soccerfreaks

chemo brain
I was going to respond, but I forgot the topic .

Take care,

Joe

Oh yeah...medical professionals and researchers have long since accepted chemo brain as a legitimate side effect of chemotherapy, and apparently much research is now being done as to the actual causes (within the chemotherapy) along with the duration. I have read studies that range from six months to two years and clearly that is only because the studies themselves are relatively new.

Now...what was the topic again?

blueroses

A neurologist's view of Chemo Brain
Hey Re,

Before I start on the subject of my response to your posting on chemo brain I first have to tell you that I am Blockbuster's favourite customer I am sure because I keep renting the same movies over and over as I always forget if I have seen them so you aren't alone. lol.

Okay so the point here. I recently asked my doc to refer me to the memory clinic here where I live. It is a big facility that deals with research on the subject and deals with alot of Altzheimer and dementia patients. Anywho, last week I went back for the results. The good news is that I don't have early Altzheimers or dementia so that's great but the neurologist said that NO DOUBT MY TREATMENTS HAVE DEFINITELY HAD SOMETHING TO DO WITH THE COGNITIVE PROBLEMS I HAVE AND MEMORY LOSS. He said that basically there are some chemo drugs that do cross the 'blood-brain barrier' and will affect the brain. For many of these patients the brain will rejuvenate itself and the issues resolve but for some, who knows why, this can be long lasting. He said that for most patients, given that they are taking the drugs that can effect the brain, this memory and cognitive issue is present during the early days of treatment and for a bit of time after but eventually they resolve as I said before. He also said that, and I didn't quite understand this but, the chemo doesn't really damage the brain but it weakens it to some extent so that when the brain is challenged by things like aging for example it just doesn't do as well as the brain of someone else of the same age who didn't have these certain chemo drugs. I guess what he was saying was that the foundation isn't as stable anymore so any pressure on it like aging or whatever effects it more. That sounds like damage to me but he seemed to think there was a difference there. You decide, lol.

Now this came from a well respected neurologist. He knew the term 'chemo brain' and HE AGREED THAT IT DEFINITELY DOES EXIST. So there you are Re, you aren't nuts. lol. Now he also said that other things can also, on top of treatment induced difficulties, cause this 'foggy thinking and forgetfulness'. One is chronic pain, that can cause - as many of us can attest a problem with our thinking patterns. Another is chronic sleep difficulties - they can cause fuzzy thinking as well. Added to that is depression and how that affects the mind as well. So add those all together and I would say that we are walking miracles, lol. Just the fact that based on the fact that I have all of the above I can't believe I can still remember how to wipe my butt daily. lol.

He told me that there wasnt alot I could do to help myself with this but he did bring up a couple of things. First he said that exercising can help to clear the thought processes if you can do it and of course eat well. He also said that some people find anti depressants helpful as they help to focus - not given as only to help depression but for this reason too. Then he said that ritalin is given sometimes as well for this issue. That shocked me, again it's a drug usually prescribed for ADHD or ADD but again it helps to focus so that's why no doubt. For me both these drug ideas carry too many side effects so I am going to get a physiotherapist to come into my home and help me with the exercise part, small thing but at least I will feel that I am helping myself somewhat.

I left that meeting feeling a little down about the damage confirmed but validated in knowing that I wasn't just dreaming this up and in fact physicians are aware of this effect. Now like I said before it's only certain drugs that will cross the blood-brain barrier so not everyone may have this effect but I know that some of mine definitely were involved. Of course I forget them now, lol. At one time they didn't think that any drugs for cancer crossed the blood-brain barrier but now they realize that they do.

Hope some of this, straight from a neurologist, helps to validate what you already knew personally, chemo brain is real. I hope this is a good day for you. Blessings, Blueroses

hodgkoid2003

blueroses said:

A neurologist's view of Chemo Brain
Hey Re,

Before I start on the subject of my response to your posting on chemo brain I first have to tell you that I am Blockbuster's favourite customer I am sure because I keep renting the same movies over and over as I always forget if I have seen them so you aren't alone. lol.

Okay so the point here. I recently asked my doc to refer me to the memory clinic here where I live. It is a big facility that deals with research on the subject and deals with alot of Altzheimer and dementia patients. Anywho, last week I went back for the results. The good news is that I don't have early Altzheimers or dementia so that's great but the neurologist said that NO DOUBT MY TREATMENTS HAVE DEFINITELY HAD SOMETHING TO DO WITH THE COGNITIVE PROBLEMS I HAVE AND MEMORY LOSS. He said that basically there are some chemo drugs that do cross the 'blood-brain barrier' and will affect the brain. For many of these patients the brain will rejuvenate itself and the issues resolve but for some, who knows why, this can be long lasting. He said that for most patients, given that they are taking the drugs that can effect the brain, this memory and cognitive issue is present during the early days of treatment and for a bit of time after but eventually they resolve as I said before. He also said that, and I didn't quite understand this but, the chemo doesn't really damage the brain but it weakens it to some extent so that when the brain is challenged by things like aging for example it just doesn't do as well as the brain of someone else of the same age who didn't have these certain chemo drugs. I guess what he was saying was that the foundation isn't as stable anymore so any pressure on it like aging or whatever effects it more. That sounds like damage to me but he seemed to think there was a difference there. You decide, lol.

Now this came from a well respected neurologist. He knew the term 'chemo brain' and HE AGREED THAT IT DEFINITELY DOES EXIST. So there you are Re, you aren't nuts. lol. Now he also said that other things can also, on top of treatment induced difficulties, cause this 'foggy thinking and forgetfulness'. One is chronic pain, that can cause - as many of us can attest a problem with our thinking patterns. Another is chronic sleep difficulties - they can cause fuzzy thinking as well. Added to that is depression and how that affects the mind as well. So add those all together and I would say that we are walking miracles, lol. Just the fact that based on the fact that I have all of the above I can't believe I can still remember how to wipe my butt daily. lol.

He told me that there wasnt alot I could do to help myself with this but he did bring up a couple of things. First he said that exercising can help to clear the thought processes if you can do it and of course eat well. He also said that some people find anti depressants helpful as they help to focus - not given as only to help depression but for this reason too. Then he said that ritalin is given sometimes as well for this issue. That shocked me, again it's a drug usually prescribed for ADHD or ADD but again it helps to focus so that's why no doubt. For me both these drug ideas carry too many side effects so I am going to get a physiotherapist to come into my home and help me with the exercise part, small thing but at least I will feel that I am helping myself somewhat.

I left that meeting feeling a little down about the damage confirmed but validated in knowing that I wasn't just dreaming this up and in fact physicians are aware of this effect. Now like I said before it's only certain drugs that will cross the blood-brain barrier so not everyone may have this effect but I know that some of mine definitely were involved. Of course I forget them now, lol. At one time they didn't think that any drugs for cancer crossed the blood-brain barrier but now they realize that they do.

Hope some of this, straight from a neurologist, helps to validate what you already knew personally, chemo brain is real. I hope this is a good day for you. Blessings, Blueroses

More On Chemo Brain...
I have several things in mind (chemo withstanding) in regards to chemo brain. Years ago, it was being described for patients who had been post-chemo an average 10 or years more. But then more studies show that chemo just does not kill bad cells, but also good ones. And for most of us, our brain cells are good ones. So, chemo can effect brain cells, especially in younger patients. From about 1992 I was a firm believer in it until recently.

I do still believe it is an issue, but the doctor that I see for late effects dismisses chemo brain. And to be honest, during a cardiac issue, I was placed on a drug that cause symptoms worse than chemo brain. And it was that drug, not my chemo past which caused the ordeal.

Search CURE magazine for articles, and also this web : http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp

One side note, while I have quit the troublesome drug, I do have some minor cognitive yet, which I will credit to chemo brain.

Paul E., (Hodkgoid2003)

RE

zahalene said:

I was in active treatment for breast cancer for 4 years (1986-1990). Chemo, rads, then being put on tamoxifen.
During that time I did not notice extreme problems with memory function. However, one day a few years ago, long after all treatments and tamoxifen were done, I was looking through some old photos. There was one of me, wig and all, on Christmas morning holding up a g i f t I had just opened. I realized that I had absolutely NO memory of that Christmas at all. It wasn't that it had run together with other years either, because the tree was in a different room than we usually used for it, and I was wearing clothes I do not remember (I was dressed and we ALWAYS did Christmas morning in jammies and robes!). It was the weirdest feeling in the world to see myself in a time and place that I have absolutely no memory of.
I also wonder what else I have lost. And wish I had lost some things that I didn't...lol. Anyhow, now I am 61 and can blame memory loss on age if I choose too, but I still keep my 'chemo card' up to date and use it whenever it makes me feel better than admitting I am just getting OLD! LOL
God bless hun.

:-)
Oh Zah you really made me laugh with your comment that you wish you could have you had lost some memories that you kept...LOL... such a silly gal! I was just mystified that I had lost that entire movie, like you who knows what else I lost...oh well if I don't recall it guess it does not matter.

Hugs to you!

RE

soccerfreaks said:

chemo brain
I was going to respond, but I forgot the topic .

Take care,

Joe

Oh yeah...medical professionals and researchers have long since accepted chemo brain as a legitimate side effect of chemotherapy, and apparently much research is now being done as to the actual causes (within the chemotherapy) along with the duration. I have read studies that range from six months to two years and clearly that is only because the studies themselves are relatively new.

Now...what was the topic again?

:-)
Geesh so glad you remembered the topic! Thanks for the info Joe!

RE

RE

hodgkoid2003 said:

More On Chemo Brain...
I have several things in mind (chemo withstanding) in regards to chemo brain. Years ago, it was being described for patients who had been post-chemo an average 10 or years more. But then more studies show that chemo just does not kill bad cells, but also good ones. And for most of us, our brain cells are good ones. So, chemo can effect brain cells, especially in younger patients. From about 1992 I was a firm believer in it until recently.

I do still believe it is an issue, but the doctor that I see for late effects dismisses chemo brain. And to be honest, during a cardiac issue, I was placed on a drug that cause symptoms worse than chemo brain. And it was that drug, not my chemo past which caused the ordeal.

Search CURE magazine for articles, and also this web : http://www.cancer.org/docroot/MBC/content/MBC_2_3x_Chemobrain.asp

One side note, while I have quit the troublesome drug, I do have some minor cognitive yet, which I will credit to chemo brain.

Paul E., (Hodkgoid2003)

Good Article
If you have an extra minute take a look at this article, very interesting indeed.

http://www.nytimes.com/2007/04/29/health/29chemo.html?ex=1178510400&en=fda0 46761b19beb1&ei=5070&emc=eta1

hodgkoid2003

RE said:

Good Article
If you have an extra minute take a look at this article, very interesting indeed.

http://www.nytimes.com/2007/04/29/health/29chemo.html?ex=1178510400&en=fda0 46761b19beb1&ei=5070&emc=eta1

University of CA
It seems that the University of CA has a lot of good neurological schools. the U of C in San Diego is the university that I found support for my statin drug issue. But I will definitely share this article with my docs. Thanks for sharing it.

Paul E. (Hodgkoid2003)

blueroses

RE said:

Good Article
If you have an extra minute take a look at this article, very interesting indeed.

http://www.nytimes.com/2007/04/29/health/29chemo.html?ex=1178510400&en=fda0 46761b19beb1&ei=5070&emc=eta1

Glad my Neurologist is on the Bit
Thanks Re for posting that link. It confirms what my neurologist recently told me about Chemo Fog/Brain. Good to know he keeps up with the latest. Very validating. Hope my post helped you with our questioning of this phenomena as well. Take care. Blueroses.

blabrn1

chemo brain
This has been the most upsetting side effect for me. I worked every other week during chemo as a hospice nurse. I was told that my taxol was going to be the most toxic part of my treatment, and indeed I lost most of my finger and toe nails in addition to all of my hair. It was a sight! I asked about the blood brain barrier aspect and potential side effects specifically because I have a history of depression and ADHD, that I had worked very hard to get good control of. I was told that if I did have any memory problems that they would be temporary, just like the hair loss. I believed that. I had no reason not to.
However, after my chemo I went back to work full time and could not execute the tasks necessary to care for my patients safely. So, I dropped down to part time, but could not complete my documentation. After about 6 months of this and getting lost on the way to my doctor appointments and not being able to find my way home (very scary) I got a GPS, but at times could not understand what she was saying. I heard the words, but they had no meaning. I requested a neuro psych test. This was done. I was very high functioning, but the areas that I complained about did show up on the test in the average to low average functioning ability. During the testing, I cried because it was the first time that I understood why I could not function at work. I have always looked at a page of information and then just knew it. Now I have to look at each item many times and try to retain it with varying degrees of success. I keep a calendar in my purse...but in my purse it is gone. So, I also keep a calendar on my wall in the kitchen where I can always see it.
At first the doc was condescending and said, well, you're fine...you're average. I told her that I did not know how to function this way. She told me there was nothing she could do for me and she did not have to take my anger. I was crying. I asked if she could do her job as her definition of average was. I've lost clinical vocabulary that I"ve known for over 20 years. It's gone. Maybe I can relearn it? Maybe it will come back.
Then I received a research article from my hospital that indicated that 20% of women are affected by chemo brain to the point that it affects their day to day lives. For others who have previous brain issues such as epilepsy, ADHD, depression ( I have two of these), the rate of incidence is even higher. Normally they say about 6 months of affect, but I was told in the last 6 months that it can be 2 years or more.

When I confronted my oncologist with this research article from her hospital and asked her why she did not at least tell me this, she said, "why, what would you have done differently?". I'm triple negative, and from the research that I've done, the treatment was the best option for long term survival for me. But the choice to take it was still mine to be made. I do not see this as informed consent. I told her, well, for one I would not have quit my job that had unlimited sick time to move closer to my fiance! She just said, "oh".

They did try to put it off to exacerbation of my ADD or to chemo induced menopause. I'm sure that my ADD did make my response worse....that's why I told them about it in the beginning and why I asked my question about blood brain barrier. As far as the menopause, I get that......but still when you are in your 40's and suddenly menopausal....why not some support for the changes. Not just empty reassurance, but crib notes for tricks that work. Naturally occurring menopause allows women time to assimilate and accommodate. I and others get the crash course. I do not believe that it has to be so difficult with a little coaching. It reminds me of the days in the beginning when menstrual cramps hurt so bad I passed out but before that it was poo-pood. However, birth control pills for a short time regulated and eliminated the pain. Saying its not really a big deal by others doesn't make it less so for the individual.

From what I read, chemo brain is tolerated and for some not even experienced.

Yesterday....I received a letter from Social Security indicating that I meet requirements for medical disability. They will review my case again in 24 months to see if appropriate treatment will improve my situation. National Institute of Health in 2004 did put out guidelines for standards of care for breast cancer survivorship. They make sense. I would like to actually try them and see how they work.

I used to work with executive management and did hospital audits and saved my health system millions of dollars through process improvement and audit appeals. I still tend to think in algorithmic terms, but I cannnot sustain it. I believe that the brain is plastic and that new pathways can be established. I do believe that. I believe that it does take time. I beleive that we should be told this up front so that we can prepare on whatever level we need to do that.

I would say to keep a journal during this time of your life..daily. And keep a binder of all of your medical interactions. Get what you need and are entitled to to recover fully and to your best potential. I believe that knowledge is key.

Best wishes.

blabrn1

blueroses said:

A neurologist's view of Chemo Brain
Hey Re,

Before I start on the subject of my response to your posting on chemo brain I first have to tell you that I am Blockbuster's favourite customer I am sure because I keep renting the same movies over and over as I always forget if I have seen them so you aren't alone. lol.

Okay so the point here. I recently asked my doc to refer me to the memory clinic here where I live. It is a big facility that deals with research on the subject and deals with alot of Altzheimer and dementia patients. Anywho, last week I went back for the results. The good news is that I don't have early Altzheimers or dementia so that's great but the neurologist said that NO DOUBT MY TREATMENTS HAVE DEFINITELY HAD SOMETHING TO DO WITH THE COGNITIVE PROBLEMS I HAVE AND MEMORY LOSS. He said that basically there are some chemo drugs that do cross the 'blood-brain barrier' and will affect the brain. For many of these patients the brain will rejuvenate itself and the issues resolve but for some, who knows why, this can be long lasting. He said that for most patients, given that they are taking the drugs that can effect the brain, this memory and cognitive issue is present during the early days of treatment and for a bit of time after but eventually they resolve as I said before. He also said that, and I didn't quite understand this but, the chemo doesn't really damage the brain but it weakens it to some extent so that when the brain is challenged by things like aging for example it just doesn't do as well as the brain of someone else of the same age who didn't have these certain chemo drugs. I guess what he was saying was that the foundation isn't as stable anymore so any pressure on it like aging or whatever effects it more. That sounds like damage to me but he seemed to think there was a difference there. You decide, lol.

Now this came from a well respected neurologist. He knew the term 'chemo brain' and HE AGREED THAT IT DEFINITELY DOES EXIST. So there you are Re, you aren't nuts. lol. Now he also said that other things can also, on top of treatment induced difficulties, cause this 'foggy thinking and forgetfulness'. One is chronic pain, that can cause - as many of us can attest a problem with our thinking patterns. Another is chronic sleep difficulties - they can cause fuzzy thinking as well. Added to that is depression and how that affects the mind as well. So add those all together and I would say that we are walking miracles, lol. Just the fact that based on the fact that I have all of the above I can't believe I can still remember how to wipe my butt daily. lol.

He told me that there wasnt alot I could do to help myself with this but he did bring up a couple of things. First he said that exercising can help to clear the thought processes if you can do it and of course eat well. He also said that some people find anti depressants helpful as they help to focus - not given as only to help depression but for this reason too. Then he said that ritalin is given sometimes as well for this issue. That shocked me, again it's a drug usually prescribed for ADHD or ADD but again it helps to focus so that's why no doubt. For me both these drug ideas carry too many side effects so I am going to get a physiotherapist to come into my home and help me with the exercise part, small thing but at least I will feel that I am helping myself somewhat.

I left that meeting feeling a little down about the damage confirmed but validated in knowing that I wasn't just dreaming this up and in fact physicians are aware of this effect. Now like I said before it's only certain drugs that will cross the blood-brain barrier so not everyone may have this effect but I know that some of mine definitely were involved. Of course I forget them now, lol. At one time they didn't think that any drugs for cancer crossed the blood-brain barrier but now they realize that they do.

Hope some of this, straight from a neurologist, helps to validate what you already knew personally, chemo brain is real. I hope this is a good day for you. Blessings, Blueroses

chemo brain
thank you for sharing this. It is validating, and matches my experience. Life changing.

soccerfreaks

blabrn1 said:

chemo brain
This has been the most upsetting side effect for me. I worked every other week during chemo as a hospice nurse. I was told that my taxol was going to be the most toxic part of my treatment, and indeed I lost most of my finger and toe nails in addition to all of my hair. It was a sight! I asked about the blood brain barrier aspect and potential side effects specifically because I have a history of depression and ADHD, that I had worked very hard to get good control of. I was told that if I did have any memory problems that they would be temporary, just like the hair loss. I believed that. I had no reason not to.
However, after my chemo I went back to work full time and could not execute the tasks necessary to care for my patients safely. So, I dropped down to part time, but could not complete my documentation. After about 6 months of this and getting lost on the way to my doctor appointments and not being able to find my way home (very scary) I got a GPS, but at times could not understand what she was saying. I heard the words, but they had no meaning. I requested a neuro psych test. This was done. I was very high functioning, but the areas that I complained about did show up on the test in the average to low average functioning ability. During the testing, I cried because it was the first time that I understood why I could not function at work. I have always looked at a page of information and then just knew it. Now I have to look at each item many times and try to retain it with varying degrees of success. I keep a calendar in my purse...but in my purse it is gone. So, I also keep a calendar on my wall in the kitchen where I can always see it.
At first the doc was condescending and said, well, you're fine...you're average. I told her that I did not know how to function this way. She told me there was nothing she could do for me and she did not have to take my anger. I was crying. I asked if she could do her job as her definition of average was. I've lost clinical vocabulary that I"ve known for over 20 years. It's gone. Maybe I can relearn it? Maybe it will come back.
Then I received a research article from my hospital that indicated that 20% of women are affected by chemo brain to the point that it affects their day to day lives. For others who have previous brain issues such as epilepsy, ADHD, depression ( I have two of these), the rate of incidence is even higher. Normally they say about 6 months of affect, but I was told in the last 6 months that it can be 2 years or more.

When I confronted my oncologist with this research article from her hospital and asked her why she did not at least tell me this, she said, "why, what would you have done differently?". I'm triple negative, and from the research that I've done, the treatment was the best option for long term survival for me. But the choice to take it was still mine to be made. I do not see this as informed consent. I told her, well, for one I would not have quit my job that had unlimited sick time to move closer to my fiance! She just said, "oh".

They did try to put it off to exacerbation of my ADD or to chemo induced menopause. I'm sure that my ADD did make my response worse....that's why I told them about it in the beginning and why I asked my question about blood brain barrier. As far as the menopause, I get that......but still when you are in your 40's and suddenly menopausal....why not some support for the changes. Not just empty reassurance, but crib notes for tricks that work. Naturally occurring menopause allows women time to assimilate and accommodate. I and others get the crash course. I do not believe that it has to be so difficult with a little coaching. It reminds me of the days in the beginning when menstrual cramps hurt so bad I passed out but before that it was poo-pood. However, birth control pills for a short time regulated and eliminated the pain. Saying its not really a big deal by others doesn't make it less so for the individual.

From what I read, chemo brain is tolerated and for some not even experienced.

Yesterday....I received a letter from Social Security indicating that I meet requirements for medical disability. They will review my case again in 24 months to see if appropriate treatment will improve my situation. National Institute of Health in 2004 did put out guidelines for standards of care for breast cancer survivorship. They make sense. I would like to actually try them and see how they work.

I used to work with executive management and did hospital audits and saved my health system millions of dollars through process improvement and audit appeals. I still tend to think in algorithmic terms, but I cannnot sustain it. I believe that the brain is plastic and that new pathways can be established. I do believe that. I believe that it does take time. I beleive that we should be told this up front so that we can prepare on whatever level we need to do that.

I would say to keep a journal during this time of your life..daily. And keep a binder of all of your medical interactions. Get what you need and are entitled to to recover fully and to your best potential. I believe that knowledge is key.

Best wishes.

Knowledge is key
I agree with you that knowledge is key, and want to express my sympathy for your ordeal. Actually, to some degree, it is empathy: as computer programmer/web developer and manager of others doing the same things, the ability to think, not only in the abstract but also at the most minute levels of logic and syntax were a source of great pride for me, along with successful professional accomplishment.

I cannot say that my problems devolved to the levels that yours did, to be honest. But have them I did, and have them I do.

Let me say this, however, on behalf of your brothers and sisters in the medical community (my wife is among them, an RN/BSN/WOCN herself): they will often, of necessity, I believe, deprive of us of POSSIBLE side effects in the expectation that they may eliminate a sort of self-fulfilling prophecy for some of us.

Just as one example, when I vomited in OncoMan's office one time (and this was my second go-round...not my second treatment: my second, completely different treatment with completely different chemicals), his response was that maybe this was 'anticipatory nausea'.

Now, I was a bit upset, to be honest, because he knew I had been around the block by now and even that this particular brand of chemo wasn't bothering me so much. But it dawned on me: they keep things from us, on occasion, in the hope that we will not develop the side effects simply because we are "supposed to".

As a medical professional, you must be aware of that issue. You folks probably have a name for it.

I am not condoning the bedside manner, if you will, of your doctor, particularly AFTER THE FACT. But I am not sure that they can predict chemobrain; I am relatively certain that they do not yet understand it completely, links to articles notwithstanding.

As such, the best they could do beforehand is to warn us of the possibility of something they really do not have a handle on themselves, therefore 'allowing' us to have it even if some or many of us do not.

I cannot fault them, personally, for not mentioning it, then, beforehand. I do, however, again, fault your doctor for not exploring it, or explaining it, as the case may be, after you came in apparent mental agony for some understanding.

The good news is, I think, that you are right: the brain finds ways to reconnect, and all of this will work itself out eventually. Do not ignore the idea that things like crossword puzzles and trivia games and such can assist you in speeding this up. That is strictly a personal opinion, but I believe it helps (it stands to reason, if you understand the workings of the brain to any degree, as you apparently do).

Best wishes. It WILL get better.

Take care,

Joe

gdpawel

Chemobrain: The Flip Side Of Surviving Cancer
This is one of the most recent studies. It's good to see the resurgence of chemotherapy side effects research. They need to help raise consciousness about the subject of Chemo Brain. All those cancer patients ignored or just plain ridiculed all these years. Chemo Brain is now part of the language and just to have it acknowledge makes a difference.

The study showed that deterioration in brain function following breast cancer therapy has negative effects on quality of life. One of the most problematic side effects of cancer treatment, chemobrain – a range of symptoms including memory loss, inability to concentrate, difficulty thinking and other subtle cognitive changes following chemotherapy – seriously diminishes women’s quality of life and daily functioning. As a result, they have to adopt a range of coping strategies to manage their restricted social and professional lives.

Breast cancer survivors tell their story in a descriptive study of the effects that cognitive impairment has on women’s work, social networks and dealings with the health care profession. Dr. Saskia Subramanian from the UCLA Center for Culture and Health in the US and her colleagues have just published their work online in Springer’s Journal of Cancer Survivorship.

An increasing number of women survive breast cancer, yet survival comes at a price. Mild cognitive impairment following chemotherapy, known as “chemobrain” or “chemofog” is one of the most commonly reported post-treatment symptoms by breast cancer survivors. Dr. Subramanian and colleagues’ work shows that this deterioration in brain function has devastating effects on breast cancer survivors’ quality of life.

Through a combination of focus groups and in-depth interviews among 74 women who had completed their course of cancer treatment at least a year earlier, the researchers gathered data on patients’ medical background, treatment experience, post-treatment symptoms, reactions from medical staff and from family and friends, self-management, strength of social networks and their perceptions of themselves.

The women described a variety of cognitive changes which they found both frustrating and upsetting. Some were less able to retain material or to digest new information and recognized that they were not functioning as they once did. Others faced reduced independence, becoming limited in their ability to manage certain responsibilities or get around. These changes made women feel scared, dependent and emotionally drained.

For some, coping meant having to cut back on work and social activities. Others had more or less accepted the limitations put on their lives and resigned themselves to a diminished cognitive capacity.

The majority of women complained about the lack of acknowledgement from the medical community when they mentioned their chemobrain symptoms. Many women wished they had received some warning and only a few got answers from their physicians. Some women felt that chemobrain confused their families and friends, and young children in particular.

Chemobrain also affected women’s performance at work. Because they were less able to focus, duties became more difficult and often took longer. This affected their efficiency and reduced their chances of promotion or assignment to projects.

The authors concluded: “These data underscore the very serious ways in which chemobrain can affect the life experiences of cancer survivors – emotionally, psychologically and economically. A clear understanding of the cognitive impairments experienced by survivors will aid researchers in developing targeted therapies and interventions aimed at improving or mitigating these post-treatment side effects.”

Reference: Boykoff N, Moieni M, Subramanian S (2009). Confronting chemobrain: an in-depth look at survivors’ reports of impact on work, social networks, and health care response.

Source: Journal of Cancer Survivorship

myrna gayle

gdpawel said:

Chemobrain: The Flip Side Of Surviving Cancer
This is one of the most recent studies. It's good to see the resurgence of chemotherapy side effects research. They need to help raise consciousness about the subject of Chemo Brain. All those cancer patients ignored or just plain ridiculed all these years. Chemo Brain is now part of the language and just to have it acknowledge makes a difference.

The study showed that deterioration in brain function following breast cancer therapy has negative effects on quality of life. One of the most problematic side effects of cancer treatment, chemobrain – a range of symptoms including memory loss, inability to concentrate, difficulty thinking and other subtle cognitive changes following chemotherapy – seriously diminishes women’s quality of life and daily functioning. As a result, they have to adopt a range of coping strategies to manage their restricted social and professional lives.

Breast cancer survivors tell their story in a descriptive study of the effects that cognitive impairment has on women’s work, social networks and dealings with the health care profession. Dr. Saskia Subramanian from the UCLA Center for Culture and Health in the US and her colleagues have just published their work online in Springer’s Journal of Cancer Survivorship.

An increasing number of women survive breast cancer, yet survival comes at a price. Mild cognitive impairment following chemotherapy, known as “chemobrain” or “chemofog” is one of the most commonly reported post-treatment symptoms by breast cancer survivors. Dr. Subramanian and colleagues’ work shows that this deterioration in brain function has devastating effects on breast cancer survivors’ quality of life.

Through a combination of focus groups and in-depth interviews among 74 women who had completed their course of cancer treatment at least a year earlier, the researchers gathered data on patients’ medical background, treatment experience, post-treatment symptoms, reactions from medical staff and from family and friends, self-management, strength of social networks and their perceptions of themselves.

The women described a variety of cognitive changes which they found both frustrating and upsetting. Some were less able to retain material or to digest new information and recognized that they were not functioning as they once did. Others faced reduced independence, becoming limited in their ability to manage certain responsibilities or get around. These changes made women feel scared, dependent and emotionally drained.

For some, coping meant having to cut back on work and social activities. Others had more or less accepted the limitations put on their lives and resigned themselves to a diminished cognitive capacity.

The majority of women complained about the lack of acknowledgement from the medical community when they mentioned their chemobrain symptoms. Many women wished they had received some warning and only a few got answers from their physicians. Some women felt that chemobrain confused their families and friends, and young children in particular.

Chemobrain also affected women’s performance at work. Because they were less able to focus, duties became more difficult and often took longer. This affected their efficiency and reduced their chances of promotion or assignment to projects.

The authors concluded: “These data underscore the very serious ways in which chemobrain can affect the life experiences of cancer survivors – emotionally, psychologically and economically. A clear understanding of the cognitive impairments experienced by survivors will aid researchers in developing targeted therapies and interventions aimed at improving or mitigating these post-treatment side effects.”

Reference: Boykoff N, Moieni M, Subramanian S (2009). Confronting chemobrain: an in-depth look at survivors’ reports of impact on work, social networks, and health care response.

Source: Journal of Cancer Survivorship

chemobrain
Is it likely that the symptoms of chemobrain would manifest four years after finishing treatment?

pkaz53

myrna gayle said:

chemobrain
Is it likely that the symptoms of chemobrain would manifest four years after finishing treatment?

chemobrain
I'm 6 years out of treatment and still have cognitive issues -chemo brain - I was hoping that by now these memory problems would subside but that hasn't happened.
I usually keep a tablet and post it notes close by so I can jot down important things such as appointments and events,I have a hard time remembering the names of someone that I met recently or a person that I havn't seen in a long time -- and it gets scarey sometimes I get in the car go down the road and have no idea where it was I was going, but the bright side is I'm still here and thankful for all that I have.

HeartofSoul

pkaz53 said:

chemobrain
I'm 6 years out of treatment and still have cognitive issues -chemo brain - I was hoping that by now these memory problems would subside but that hasn't happened.
I usually keep a tablet and post it notes close by so I can jot down important things such as appointments and events,I have a hard time remembering the names of someone that I met recently or a person that I havn't seen in a long time -- and it gets scarey sometimes I get in the car go down the road and have no idea where it was I was going, but the bright side is I'm still here and thankful for all that I have.

Here is a question i have
Here is a question i have yet to have answered. how is it that some get chemo brain despite the chemo they were on (as is the case with most chemos) did not cross the brain blood barrier to enter the brain.

DianeJa

therapy
It is right that chemotherapy and radiation can affect some nervous cells because they are very sensitive.Also in some cases associative therapy like the one of Steroids used for a long time can affect the nervous system.Diane James

gdpawel

myrna gayle said:

chemobrain
Is it likely that the symptoms of chemobrain would manifest four years after finishing treatment?

Chemo Brain - Ten Years Out
There has been some recent resurgence of chemotherapy side effect research. They need to help raise consciousness about the subject of Chemo Brain. All those cancer patients ignored or just plain ridiculed all these years.

Chemo Brain is part of the language now and just to have it acknowledged makes a difference. The choice of researchers to integrate promising insights and methods remains an essential component of new paradigms of cancer treatment.

There are many reasons as to why chemobrain may occur. One is that some types of chemotherapy can cross the blood/brain barrier. Another is that the cognitive problems are created by free radicals, the toxic elements that many types of chemotherapy produce. And yet another is that some people have a genetic background that makes them more susceptible to the effects of chemotherapy. Most likely it is not just one factor but many factors that combine to set the stage for chemobrain to occur.

According to studies by Dartmouth-Hitchcock Medical Center, even standard-dose chemotherapy can negatively impact the cognitive functioning of cancer survivors up to 10 years after treatment. Reports of depression, anxiety, and fatigue, all of which can affect cognitive functioning, suggests that the differences in performance on cognitive tests were due to the chemotherapy itself, not to greater levels of depression, anxiety, and fatigue in patients who received chemotherapy.

This is one of the most recent studies:

The study showed that deterioration in brain function following breast cancer therapy has negative effects on quality of life. One of the most problematic side effects of cancer treatment, chemobrain - a range of symptoms including memory loss, inability to concentrate, difficulty thinking and other subtle cognitive changes following chemotherapy - seriously diminishes women's quality of life and daily functioning. As a result, they have to adopt a range of coping strategies to manage their restricted social and professional lives.

Breast cancer survivors tell their story in a descriptive study of the effects that cognitive impairment has on women's work, social networks and dealings with the health care profession. Dr. Saskia Subramanian from the UCLA Center for Culture and Health in the US and her colleagues have just published their work online in Springer's Journal of Cancer Survivorship.

An increasing number of women survive breast cancer, yet survival comes at a price. Mild cognitive impairment following chemotherapy, known as "chemobrain" or "chemofog" is one of the most commonly reported post-treatment symptoms by breast cancer survivors. Dr. Subramanian and colleagues' work shows that this deterioration in brain function has devastating effects on breast cancer survivors' quality of life.

Through a combination of focus groups and in-depth interviews among 74 women who had completed their course of cancer treatment at least a year earlier, the researchers gathered data on patients' medical background, treatment experience, post-treatment symptoms, reactions from medical staff and from family and friends, self-management, strength of social networks and their perceptions of themselves.

The women described a variety of cognitive changes which they found both frustrating and upsetting. Some were less able to retain material or to digest new information and recognized that they were not functioning as they once did. Others faced reduced independence, becoming limited in their ability to manage certain responsibilities or get around. These changes made women feel scared, dependent and emotionally drained.

For some, coping meant having to cut back on work and social activities. Others had more or less accepted the limitations put on their lives and resigned themselves to a diminished cognitive capacity.

The majority of women complained about the lack of acknowledgement from the medical community when they mentioned their chemobrain symptoms. Many women wished they had received some warning and only a few got answers from their physicians. Some women felt that chemobrain confused their families and friends, and young children in particular.

Chemobrain also affected women's performance at work. Because they were less able to focus, duties became more difficult and often took longer. This affected their efficiency and reduced their chances of promotion or assignment to projects.

The authors concluded: "These data underscore the very serious ways in which chemobrain can affect the life experiences of cancer survivors - emotionally, psychologically and economically. A clear understanding of the cognitive impairments experienced by survivors will aid researchers in developing targeted therapies and interventions aimed at improving or mitigating these post-treatment side effects."

Reference: Boykoff N, Moieni M, Subramanian S (2009). Confronting chemobrain: an in-depth look at survivors' reports of impact on work, social networks, and health care response. Journal of Cancer Survivorship; DOI: 10.1007/s11764-009-0098-x

Source: Journal of Cancer Survivorship

bluerose

HeartofSoul said:

Here is a question i have
Here is a question i have yet to have answered. how is it that some get chemo brain despite the chemo they were on (as is the case with most chemos) did not cross the brain blood barrier to enter the brain.

Hi Heart
My neurosurgeon who diagnosed my issues with chemo brain told me that only certain chemo drugs do cross the blood brain barrier. I had 2 of those drugs. Now I saw him for the results of all my testing about maybe 4 years ago I guess it was, maybe a little closer to 3, so maybe by now other studies have come out to eliminate that finding but at that time that was his answer as to why some cancer patients on chemo develope chemo brain and others do not.

Let's face it - cancer treatments are really still in their infancies in really understanding what works and what doesn't, what is too extreme in treatments like the decision made not to do total body radiation (which is what I had) as much as they used to if at all. I have lots of side effects from just the radiation.

Anywho just thought I would throw in my 3 cents on the question.

Take care Heart.

Blessings,

Bluerose

JPJC

gdpawel said:

Chemo Brain - Ten Years Out
There has been some recent resurgence of chemotherapy side effect research. They need to help raise consciousness about the subject of Chemo Brain. All those cancer patients ignored or just plain ridiculed all these years.

Chemo Brain is part of the language now and just to have it acknowledged makes a difference. The choice of researchers to integrate promising insights and methods remains an essential component of new paradigms of cancer treatment.

There are many reasons as to why chemobrain may occur. One is that some types of chemotherapy can cross the blood/brain barrier. Another is that the cognitive problems are created by free radicals, the toxic elements that many types of chemotherapy produce. And yet another is that some people have a genetic background that makes them more susceptible to the effects of chemotherapy. Most likely it is not just one factor but many factors that combine to set the stage for chemobrain to occur.

According to studies by Dartmouth-Hitchcock Medical Center, even standard-dose chemotherapy can negatively impact the cognitive functioning of cancer survivors up to 10 years after treatment. Reports of depression, anxiety, and fatigue, all of which can affect cognitive functioning, suggests that the differences in performance on cognitive tests were due to the chemotherapy itself, not to greater levels of depression, anxiety, and fatigue in patients who received chemotherapy.

This is one of the most recent studies:

The study showed that deterioration in brain function following breast cancer therapy has negative effects on quality of life. One of the most problematic side effects of cancer treatment, chemobrain - a range of symptoms including memory loss, inability to concentrate, difficulty thinking and other subtle cognitive changes following chemotherapy - seriously diminishes women's quality of life and daily functioning. As a result, they have to adopt a range of coping strategies to manage their restricted social and professional lives.

Breast cancer survivors tell their story in a descriptive study of the effects that cognitive impairment has on women's work, social networks and dealings with the health care profession. Dr. Saskia Subramanian from the UCLA Center for Culture and Health in the US and her colleagues have just published their work online in Springer's Journal of Cancer Survivorship.

An increasing number of women survive breast cancer, yet survival comes at a price. Mild cognitive impairment following chemotherapy, known as "chemobrain" or "chemofog" is one of the most commonly reported post-treatment symptoms by breast cancer survivors. Dr. Subramanian and colleagues' work shows that this deterioration in brain function has devastating effects on breast cancer survivors' quality of life.

Through a combination of focus groups and in-depth interviews among 74 women who had completed their course of cancer treatment at least a year earlier, the researchers gathered data on patients' medical background, treatment experience, post-treatment symptoms, reactions from medical staff and from family and friends, self-management, strength of social networks and their perceptions of themselves.

The women described a variety of cognitive changes which they found both frustrating and upsetting. Some were less able to retain material or to digest new information and recognized that they were not functioning as they once did. Others faced reduced independence, becoming limited in their ability to manage certain responsibilities or get around. These changes made women feel scared, dependent and emotionally drained.

For some, coping meant having to cut back on work and social activities. Others had more or less accepted the limitations put on their lives and resigned themselves to a diminished cognitive capacity.

The majority of women complained about the lack of acknowledgement from the medical community when they mentioned their chemobrain symptoms. Many women wished they had received some warning and only a few got answers from their physicians. Some women felt that chemobrain confused their families and friends, and young children in particular.

Chemobrain also affected women's performance at work. Because they were less able to focus, duties became more difficult and often took longer. This affected their efficiency and reduced their chances of promotion or assignment to projects.

The authors concluded: "These data underscore the very serious ways in which chemobrain can affect the life experiences of cancer survivors - emotionally, psychologically and economically. A clear understanding of the cognitive impairments experienced by survivors will aid researchers in developing targeted therapies and interventions aimed at improving or mitigating these post-treatment side effects."

Reference: Boykoff N, Moieni M, Subramanian S (2009). Confronting chemobrain: an in-depth look at survivors' reports of impact on work, social networks, and health care response. Journal of Cancer Survivorship; DOI: 10.1007/s11764-009-0098-x

Source: Journal of Cancer Survivorship

Chemo-brain
I have stage IV colon cancer (last treatment about 2yrs. ago) and in addition to some other symptoms such as depression, I stutter occasionally, have some difficulty concentrating, experience neuropathy in feet as well as some cognitive impairment and other things.

It is difficult at times to get my wife and others to take it serious - as I may have experienced some of this prior to cancer, but it sure seems real to me.

Also, some of the events that occurred during the time I was ill and receiving treatment, I have forgotten completely. My wife may recall some event to me that I have no recollection of. It seems at times that I feel bad and guilty for claiming these and other symptoms, but again, they seem real to me. And even though my experiences (as well as those of others) with chemo-brain is not backed by any science, it would be my guess that as time progresses, there will be some solid research indicating that chemo-brain is real. On the surface it would seem that the chemicals placed in my body that saved my life, may have some serious side-effects. This is not to minimize the benefit that I have gained from the chemotherapy, as I am still here.