• Just what is "chemo brain?"

    Asked by fastdog on Wednesday, December 5, 2012

    Just what is "chemo brain?"

    I'm new here, and no doubt this subject has come up before, but just what is "chemo brain?" There was a brief discussion of it on tv news last week, and I've seen the term used here in passing, but I never encountered it before. When I was going through chemo, no one ever mentioned it to me. I do struggle at times to remember a word, but don't know if that has anything to do with having had chemo, or just normal aging. I'm wondering how this has affected people and how they cope.

    17 Answers from the Community

    17 answers
    • FreeBird's Avatar

      Whatever chemo brain is, sometimes I think I had it even though I never received chemotherapy as a caregiver. There's just so much going on in a short period of time that I have to write everything down or else I'll forget it.

      Here's information on "chemo brain." http://www.mayoclinic.com/health/chemo-brain/DS01109/METHOD=print




      almost 5 years ago
    • abrub's Avatar

      Chemo brain refers to a forgetfulness or inability to retain information or focus that commonly occurs as a result of chemotherapy. Not everyone suffers from it, but from what I've heard, people who have it realize they are not processing everything as normal. Although my chemo (5FU) commonly causes chemo brain, I was very fortunate in that I did not suffer from that side effect. It usually subsides some time after the completion of chemo, tho that time frame varies with the individual.

      almost 5 years ago
    • SueRae1's Avatar

      Chemo brain can take make forms - forgetting where you put things, the inability to complete a sentence, aphasia, not remembering the the right word to describe what you are trying to say. Some of it is caused by the meds themselves, some by the stress of the situation. I joke that DH has chemo brain by proxy.

      almost 5 years ago
    • nancyjac's Avatar

      I'm not sure exactly how to describe this, but chemo brain is definitely different from having an occasional "senior moment". A senior moment is forgetting where you put your keys or forgetting a phone call you were suppose to make. Chemo brain is more of a consistent and acute onset short term memory problem where you have trouble with things that you good do on autopilot before. I often totally forget how to spell or pronounce a word that before chemo I never had a problem with. I can have absolutely no recall of something someone said to me 2 minutes ago, or go from one room to another and by the time I get there forget why I was going there.

      I have to right everything down and sometimes additionally I have to tell somebody to remind of appointments or just something I wanted to do an hour from now. I've developed of number of reminder or tickler systems that are essential to me to maintain commitments and organization.

      almost 5 years ago
    • IKickedIt's Avatar

      Ahh, lovely chemo brain...oh, is that what this question was about? My short-term memory and the ability to immediately recall things were both fried. I differentiate between the two because I believe that there is a notable difference....short-term is yesterday, the day before or a week ago or even a few weeks ago. Immediate recall is exactly what it sounds like...forgetting why you walked into a room, picking up the phone and not remembering who you intended to call.

      I completed chemo a little more than a year ago and my immediate recall has improved quite a bit, but my short-term is still slow. I also have lost the ability to multi-process, which was one of my strong points. I also find that I have to "turn-on" my brain. In the past, I would drive to work and my mind would be going non-stop with creative ideas, things I needed to do once I got there. I realize that now I just drive or function and the mind is just doing the task I set out to do...I have to literally tell myself, OK...let's think about what I need to do this evening once I get home (then of course when I get to a red light, I pull out the notepad I keep in my car and write it down). Unless I make a concerted effort to turn on my my mind, I will just drive without thinking about anything else.

      I am now very weak with remembering names, situations (like if a friend's mother is sick, I won't even remember learning about it), or recalling details of things I did either at work or while talking to people.

      Very frustrating, hurts the confidence in the work place and affects the social skills. I keep detailed notes, carry a note pad at all times and even call my answering machine at home to remind myself to do things. Oh well....I'm alive and cancer-free. It's a small price to pay and old age will eventually zap whatever brain cells I have left anyway!!

      almost 5 years ago
    • JMS's Avatar

      I saw the segment on NBC as well, and was relieved that it's now medically proven that "chemo-brain" exists. For me, it has meant that I have conversations about which I cannot remember details and during which I sometimes make commitments that I also do not remember (like agreeing to take care of my grand-children), then not showing up to do so because my "chemo" infused brain forgot. Once I realized what was going on, I let my family know that my memory would be unreliable until treatments stopped and I recovered. I also let everyone know, doctors' offices included, that they needed to follow up with an e-mail to confirm any appointments or commitments of my time. I take notes at doctors' appointments and write out questions in advance. I use lists for pretty much everything now (just don't forget where you put the list!). Chemo-brain is highly annoying, but with work-arounds, you can get through it.

      almost 5 years ago
    • tomget's Avatar

      I'm pretty new to cancer awareness but I'm interested to see this question, because my sister who had chemo for breast cancer some years back became a noticeably different personality. We live a distance from each other and only get together every year or so, and I was taken aback by so many little differences. It was still her, but she'd developed a different giggly laugh? that she'd never had before, and couldn't keep up with her occupation and went on disability or early retirement and such. Just kinda confused mostly. But still productive and active and quite happy. But definitely a change in personality..maybe happier? So not suffering or anything. It's still her, but she's just different. She still is and its been maybe 6 or 7 years..something like that. And she wasn't like that before the chemo and surgery etc..so its impossible to know what's what, but for sure a big and apparantly in her situation permanent..at least so far.

      almost 5 years ago
    • kenw's Avatar

      I concur completely with Ikickedit's comments.
      When I was diagnosed with SSC base of tongue, we (spouse and I) were inundated with information. I read and re-read everything until I understood what could, should and would occur during my treatment. My wife must have not paid too much attention to the info/explanation regarding "chemo-brain". Until we both saw the news clip on TV (and followed-up with readings), she thought I was in the early to mid stage of Alzheimer's disease. Realizing that my behavior is a side effect of my treatment has and continues to improve our already rock-steady relationship.

      almost 5 years ago
    • carm's Avatar

      Fastdog, this is a great question and oddly enough, one that takes its root in a specific cancer when it first came to light. My name is Carm, and I am an oncology/end of life nurse. I specialize in gyne cancers, and I have seen a few patients who have complained of this syndrome, so let me try and answer your question. First, what is it? It is a temporary lack of cognitive function to certain parts of the brain thought to be caused by some cancer treatments. Some patients report memory and concentration problems, have feelings of isolation, fatigue, anxiety or depression. Either way you look at it, it is caused by a metabolic imbalance brought on by some therapies. Initially, it was breast cancer patients who first brought it to light, and they were the ones who pushed the research into chemo-brain in the mid 90s. During support groups and online chat groups many women were complaining of this. A columnist named Barbra Seaman from Ladies Home Journal and Good Housekeeping heard about it and started gathering data on chemo-brain. She felt that the FDA was not open and honest about the side effects of some drugs, and she connected to this syndrome on a personal level because she remembered her confused feelings before and after giving birth to her daughter. Many feel it has to do with hormone levels as it seems to be a complaint mostly reported by breast, prostate, and gyne cancer patients. When you consider the cognitive effects some anti-emetics, steroids, or pain killers have on a persons cognitive status, it's not impossible to believe that it could happen in the brain as well. It typically takes months for some patients to feel they have finally returned to an acceptable cognitive level after treatment, but then it typically takes about 3 or 4 months for hair and nails to grow back, or a patients energy status to return to normal. So it is not a far stretch to think that this feeling of confusion or forgetfullness isn't also a part of the post chemotherapy process. Also, consider this: almost 1/3 of all women under 40 who get chemo go into menopause, and for women over 40, 90% start menopause right after chemo, I can imagine that this shift in hormone levels can be a contributor to the confusion and concentration issues. Plus, there are many other things that could contribute to chemo-brain like unrelated hormonal issues, sadness, stress, low blood counts, thyroid disease, cardiac disease, or just fatigue. Some liver of kidney cancer patients describe it as well, but this could be contributed to the high levels of Ammonia in their brain that alters their thought process. In closing, it is something to ponder but it is not a common side effect for every person who has been treated with chemo and in retrospect, it has been reported to have occured with patients who have been brain radiated as well, so this is not specific to chemotherapy. Because it is mostly seen as a common complaint associated with cancers that are hormone driven, it is not an issue for all cancer patients. However, it is not exclusive to only hormone driven cancer, just more prevalent with these patients. I hope I have shed some light on the subject for you and clarified this issue a bit. It is a great question and I applaud you for asking it, Carm.

      almost 5 years ago
    • BoiseB's Avatar

      There are several questions here dealing with Chemo Brain. YES IT IS REAL you can find more answers by going to the QUESTIONS tab and scroll down to QUESTIONS and there is a search function. I was particularly hit hard with "chemo brain" and I didn't even realize how hard. It was not until about a year after my last treatment that I realized how hard I was hit. " It occured when my daughter said "Mom at last I have had a real conversation with you" It affected me not only with memory loss but also with the inability to concentrate and general loss of cognative skills. This is very painful to me because I come from a highly intelligent family. (Trivial Persuit " is a part of every family gathering). My brothers and sister hold advanced degrees and my son is a lawyer and my daughter is a professor. That being said I have found that getting my brain back has been a wonderful challenge. The most helpful thing I have found is my Bible Study Group because we memorize verses from the Bible. If you are not religious, I think that a Book Club or Card Club would be as helpful. For seniors, local senior centers offer Card Game Clubs and various sorts of Discussion Groups. Also getting involved in Computer Games is a really fun way to combat chemo brain. My son gave me "Civilization" A word of warning here computer games can be addictive I have been known to sit down to play for a little while before bedtime only to look at the clock and see that it is four AM.

      almost 5 years ago
    • HeidiJo's Avatar

      I suffered from "chemo brain" I suppose there is a medical term for it. I could not remember simple words. I talked slower because I would have trouble thinking of words.
      It went away a couple of months after my treatments stopped

      almost 5 years ago
    • jhale17's Avatar

      Chemo Brain

      MY THOUGHTS ON CHEMO BRAIN - September 2007

      In order to give you my experience with chemo brain first please acquaint yourselves with the medical field’s description. Here are a few excerpts from the American Cancer Society. For the full article go to Seeking Solutions to “Chemo Brain” What Causes It? Who’s at Risk? Dated 2004/06/17 may be seen at, http://www.cancer.org/docroot/NWS/content/NWS_2_1x_Seeking_Solutions_to_Chemo-Brain.asp

      “Just about anyone who's had any experience with cancer knows that chemotherapy can cause some unpleasant side effects. Nausea, fatigue, and hair loss are all common complaints.

      Over the past few years, though, a lesser-known side effect -- the cognitive dysfunction commonly called ‘chemo-brain’ -- has been getting more attention from patients and doctors.

      We have increasing numbers of long-term cancer survivors who are trying to get back to a normal routine, and that's where you begin to notice things like cognitive side effects of chemotherapy.

      'Subtle Shifts'

      People who have chemo-brain may find themselves unable to concentrate on their work, or unable to juggle multiple tasks. Some find they don't remember things as well as they used to.
      The impact on the individual really depends to a large extent on what kind of demands they have at work or in life in general… People who have very demanding or stressful jobs, or have to multitask and need high cognition, those people are going to notice subtle shifts.
      Subtle or not, chemo-brain is frustrating to patients, who may suddenly find themselves unable to accomplish tasks they formerly completed with ease. And it's a mystery to doctors, who are still trying to understand what causes it and who is likely to suffer.

      But researchers are making progress, and new studies have yielded more insights.
      Patients must also remember that most people do eventually recover fully from the effects of chemotherapy.

      Lots of people have cognitive problems during chemotherapy, but there is a recovery process that goes on with time… A lot happens over 6 months, more over 1 year, and some after 2 years.

      For a given individual, chances are that their cognitive function will recover to normal or near-normal levels a year or two after chemo."

      End of American Cancer Society excerpts.

      Here is a summary of my personal experiences with Chemo Brain.

      There are side effects to chemotherapy and the one that is hard to explain are those that affect the brain.

      When I use the nonprofessional term of chemo brain, I liken it to the term headache. Their similarities are not in the type of symptoms they share, as much as they both refer to a large category of ills.

      Headaches are well known and most people understand that they come in many forms, some mild, some severe, some easily treatable and some not. To my understanding chemo brain also has a wide range of effects, most of which are short term during and after chemotherapy treatments.

      For me the effects have been short term. They started during and continued after treatment. They varied from day to day with mornings more difficult than afternoons. The symptoms tend to be lack of concentration, flu like feelings in the head that I refer to as dull headiness. This dullness caused indifference in doing many of my normally enjoyable activities. Things I normally respond to as “why not” became “why bother.”

      An example is that I was disappointed in my inability to want to watch football on TV. The fast action in the video was just too much for the little grey cells in my brain to process without making me want to turn away for the TV set. I found myself choosing activities that required slower brain processing time.
      Another effect is postural light headiness where when getting into a standing position too quickly you become momentarily lightheaded. This is not necessarily chemo brain as it is low blood counts or low blood pressure; just another thing one’s head may go through in chemotherapy.

      You must keep in mind that everyone is different and what side effects I experienced may not happen to others.

      Fortunately, my symptoms resolved themselves shortly after chemotherapy. Some effects improved by the day others took longer before I noticed any change. The things with serious impacts on my normal activities started getting better in a couple of weeks. Obtaining a clear head that allowed me to have a productive day came after about a month. It was sure a good feeling to get back to the “why not” mode and loose the “why bother” syndrome.

      Other minor chemotherapy side effects lingered for many months, mainly needing naps and having to conserve your energy to do the important things before “dropey” sets in. To me, dropsy is that feeling of wanting to drop into every chair you walk by in order take a rest. These issues got better with time. However, I still find myself using the phase chemo brain when I forget something and no one really knows for sure if it is.

      almost 5 years ago
    • Richardc's Avatar

      Everyone is affected differently. For me, forgetting simple things, persons names (people I've known and seen for years). Also, multitasking no longer worked. Simple tasks - like making oatmeal were something that required my complete attention. To cope, I found that I had to concentrate on the present task. I also make numerous notes and reminders to myself. I am 3 1/2 years out from treatment and have found that things do get better. I may not be as strong at analyzing things as I used to, but the more I forced myself to work through puzzles and equations, the easier it gets. Remind those around that patience and time will help restore self confidence. You may not get back to where you were, but you will find a new normal, and ways to cope and adjust.

      almost 5 years ago
    • tombo's Avatar

      omg,,i forget EVERYTHING,,and some doctors say it doesnt exist,,paaaalllleeezze,,anyhow,,i just go with the flow,,it can be very frustrating,,and frustrating for friends and family,,but,,it only effects my short term,,,mostly,,here is how i see it,,it is THE LEAST of my problems,,i would even worry about it

      almost 5 years ago
    • ConnieB's Avatar

      I think if you have it you would know or someone would tell you you do. lol It is something I have struggled with even after being done with chemo for a year. I'm told it gets better, but not yet for me. I struggle with words that are on the tip of my tongue, looking at people like they are speaking a foreign language and stuttering because I can't get my thoughts and mouth to work together and not retaining things I read. I look forward to this improving.

      almost 5 years ago
    • Wherdmabraingo's Avatar

      Finished chemo and radio 17 months ago. I have memory probs with names words etc but the worst of it is whole conversations, chunks of time that to me just didn't even happen, no memory of them at all. It's like the tail lights on your car-unless someone tells you they're not working , you have no way of knowing. Recently people have brought it to my attention and I realise how bad it is. It's like my brain shuts off for anything up to 15 minutes at a time.

      over 4 years ago
    • DaveWaz's Avatar

      Your question inspired a blog article we wrote about chemo brain.

      Blame it On the Chemo Brain - Tips and Tricks for Coping

      For you and others who may be coping with chemo brain, perhaps you will find it helpful.


      about 4 years ago

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