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Chemo Brain

nanette7fl
nanette7fl Member Posts: 412

Chemo Brain Is Real, Researchers Say

Many women who get chemotherapy to treat breast cancer say they have problems remembering, thinking, and concentrating during and after treatment. These problems are commonly called "chemo brain" or "chemo fog" -- doctors call these issues "cognitive impairment" or "cognitive problems." Some women may have trouble with:

  • learning new tasks
  • remembering names
  • paying attention and concentrating
  • finding the right words
  • multitasking
  • organizing thoughts
  • remembering where things are (keys, glasses, etc.)"
What are your personal experiences? I'm beginning to experience this during my treatments and would like to learn from you what you experienced and how you coped.


~Nanette

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Comments

  • RosieRed
    RosieRed Member Posts: 209
    edited January 2019

    I'd say the one thing I've noticed after having chemo is that when I try to remember something, my brain just comes up blank. Before chemo it felt like my brain could think of something, some connection to something else that would lead me to a memory and then I'd remember. Now I try to remember something and I swear you could hear crickets chirping in my brain because it's not making the connections at all like it used to. It can be frustrating, but I try to tell myself not to get too upset about it and I'll try to think of it later

  • spookiesmom
    spookiesmom Member Posts: 8,149
    edited January 2019

    I be in the middle of a sentence and just go blank. I’d giggle and say “chemo brain”. The rest would either come to me, or the other person would give me a prompt.

    I also drove about a mile past my street after an infusion. That bothered me, so I tried to be more alert while out.

    For me, it wasn’t real bad. But I’m retired and didn’t have work to worry about.

  • murfy
    murfy Member Posts: 254
    edited January 2019

    I temporarily went off AIs for some SEs and noticed that my brain fog lifted. Thinking I have chemo brain made worse by AIs.

  • MoonGirlJess
    MoonGirlJess Member Posts: 211
    edited January 2019

    I left the sliding door open. Great. Heating the outside all night long. Also found my car door open. Forgot to shut it. I lose my words all the time. I have little focus. I’m actually surprised and thankful when I can remember anything.

    I’m not sure how much is chemo brain vs not sleeping well. I have volcanic night sweats from 2 am on. I sleep very little. It sucks. So I’m perpetually tired and not too smart right now, what a combo

  • Hazel-Nut
    Hazel-Nut Member Posts: 116
    edited January 2019

    I usually have very little memory of chemo days and the first couple days after. I'll say things to my husband that I don't remember after. We have about 20lb of potatoes at home right now because I kept buying a new bag of them on my way home because I was convinced I had forgotten to get them when I was grocery shopping and repeated that for 4 days. I keep receiving packages in the mail of things I've ordered that I forgot about so every day is like Christmas lol. We now have enough food storage containers to last until the apocalypse. My whole life is a series of half done tasks - laundry in the wash that doesn't make it to the dryer, filled a trash bag of junk in my car but keep forgetting to run it to the dumpster, return labels for my surprise online orders printed but keep forgetting to take the boxes to the post office. I'm doing ok so far at work - I've made a few critical errors and was left scrambling to cover myself but for the most part my coping strategies are getting me through the workday. I have to write down ever single thing I do or need to do. At home I'm a chemo brain mess but it's mostly something I can laugh about and get through with good humor.

    My husband is kinda loving it because pre chemo me never forgot a single thing ever. I was the worst person to get in an argument with. I'm learning to give up control a little bit. Pre chemo me had to have everything done in a very exact and specific way and now I just don't care. I don't have the attention span for it.

  • nanette7fl
    nanette7fl Member Posts: 412
    edited January 2019

    brain fog... makes me feel like my mind is in outer space and the rest of me is down here on earth. And the mental thoughts are like being beamed to my body or my thoughts have to run the gamut through a ball of cotton. I just feel so disconnected from me.

  • cbk
    cbk Member Posts: 323
    edited January 2019

    Nanette

    For what it’s worth, my chemo brain got much better with time. It can be very debilitating, the best thing for me was getting back to work and stay super occupied. But I remember days I thought I would never function properly again.

    The fog did clear.

  • Fritzmylove
    Fritzmylove Member Posts: 262
    edited January 2019

    I just finished chemo 2 weeks ago, so I'm still in the thick of it, but some examples of my chemo brain:

    I couldn't think of the word "iguana" yesterday when my son was calling a picture of one an "iguanodon." I had to ask my husband "what's the big lizard called with the spikes on its back." I felt like an idiot.

    Playing a game of cards is frustrating for everyone involved. I can't keep track of who's turn it is, what trump was called, what card was lead, etc. I played a game of euchre over the holidays with my sister, who went through chemo for thyroid cancer 13 years ago... our partners were about to quit because between the two of us, we couldn't keep track of anything which made the game drag on forever.

    I have to concentrate intently to conversations, and even then, I have a hard time following along or coming up with meaningful responses. I'm an introvert by nature, so chemo brain makes it even more difficult for me to socialize.

  • fishingal68
    fishingal68 Member Posts: 32
    edited January 2019

    Chemo brain is real. The two areas I noticed it the most was trying to remember names/faces, and words that I should be able to remember, but I cannot. And then I obsess about it. Usually I remember the word I forgot 2 days later. I want my brain back!

  • leftduetostupidmods
    leftduetostupidmods Member Posts: 346
    edited January 2019

    My last chemobrain affected word: "that thing you open and close a zipper with" Because of course "zipper pull" totally got in hiding.

  • Sassa
    Sassa Member Posts: 98
    edited January 2019

    I noticed two areas of cognitive dysfunction. Chemo was back in late 2006-early 2007 with one year of herceptin.

    First was in math. I have always been able to do calculations of advanced math in my head. After chemo, I couldn't do simple math without paper and pencil and doing it was laborious and often was incorrect.

    Second was spelling. I knew the word I wanted, but I couldn't begin to spell it. I would have no idea of even the first letter.

    It was about one year after the end of the herceptin that my spelling ability slowly came back and is now back to normal.

    The math has been more difficult. I can now do the simple elementary school level of math in my head. Anything more complex needs paper and pencil, a calculator and lots of thought. Thank goodness I no longer work where complex calculations for sterilization cycles and other calculations were part of my work.


  • aterry
    aterry Member Posts: 142
    edited August 2019

    All your posts ring true. Unfortunately my chemobrain has not gotten better with time. I've been post final chemo for 2 1/2 years. I can't do* anything that requires strong processing skills--especially financial stuff with variables, such as trying to pick flights from a travel site. Bank statements; statements from insurance companies; electric bill. Or anything with a lot of visual stimulation such as shopping at IKEA or the Container Store. I no longer play music at home because I can't process the audio while I'm trying to think. I run out of random access memory--I call it beach-balling (like the colored disc that spins on Apple interface).

    I experience actual physical symptoms. It feels numb or stuffy behind my eyes; behind my ears; my lips get numb; numbness behind my brow. Is the brain log jam causing too much blood flow? Too little blood flow? Also, this happens if I skip a meal. Could it be related to blood sugar?

    I had a thorough neuropsych eval by someone well versed in breast cancer. She estimated that I'd lost 15% of my cognitive abilities. She recommended on-line games which I did for 6 months but they didn't help.

    Everyone says, "Do one thing at a time." Which I do but then I end up many tasks behind.

    I know that research has been focused on keeping us alive; I think only recently are researchers looking at the side effects.

    *can't do well or efficiently


  • aterry
    aterry Member Posts: 142
    edited October 2019

    Army of Women is connecting volunteers to a study of a cognitive tool. The study is in NYC. I can't participate, alas, because I'm over 65 but I hope they get their enrollment and proceed with the work. I'm curious to know more about this irksome side effect of chemo and if there is any way to lessen the damage. The researcher is: James Root, PhD, Memorial Sloan Kettering Cancer Center, New York, NY

    The research team needs both women who have been diagnosed with stage 0 (DCIS) to stage III breast cancer and women who have not had cancer to participate so the researchers can compare test results between the two groups.

    https://www.armyofwomen.org/studies/72128

  • Ktpittston
    Ktpittston Member Posts: 3
    edited October 2019

    I feel like I’m losing it. I forget things constantly, can’t concentrate for long and frequently end up I tears from missed appointments, wrong directions, going to the store multiple times because I can’t remember what I need, and lots of little things throughout the day where I am at a loss for words or forget what I’m doing. No one ever told me it would be so hard so far out. I switched from AIs to tamoxifen and it’s not helping. Tamoxifen makes depression much worse 

  • Marcia1111
    Marcia1111 Member Posts: 8
    edited October 2019

    I hate to tell you, but I still feel like I have chemo brain and I’m seven years out. I experience everything already described. I hate it!

  • Brilee76
    Brilee76 Member Posts: 190
    edited October 2019
    • paying attention and concentrating
    • finding the right words
    • organizing thoughts
    These are the ones I notice.
  • rubyredslippers
    rubyredslippers Member Posts: 94
    edited October 2019


    I’m 11 years out. Chemotherapy induced cognitive impairment is very real. For me it’s mainly forgetting things, like from one moment to the next sometimes. Marcia1111; you’ll have this for life. Google what bc drugs do to the brain. It’s been proven they shrink a part of the brain. That’s why I don’t call it chemo brain - that implies it’s only a problem during chemo then full recovery. Not true. I was never told this could happen and f course I’ve never been offered any kind of help or therapy for it. That’s how medical oncologists operate - denials, lies and cover ups. They wouldn’t have any customers otherwise. 

    Bitter? You bet. It’s the ultimate betrayal of trust to not disclose potential damage to our bodies. For a 2% benefit. Read about all the denials when the evidence abounds, google that too.


    I’m sorry to this happened to your brain. You have a right to know what happened to you, just google it it’s all there. 

  • Mncteach
    Mncteach Member Posts: 241
    edited October 2019

    I spoke with the NP worried about chemo brain before starting treatment. My boss definitely has cognitive impairment due to chemo and I wanted to avoid it if possible. Her suggestion was to learn something new or more than one something and keep your brain active while getting treatments. I learned a new card game and did word games on my tablet and I also worked as much as possible during chemo. While I definitely have had side effects and when I’m overtired I have a really hard time, overall,5 months PFC, I have had no real big issues. It gets better everyday and I try to stay rested, but with the aid of my phone’s calendar and,I believe, keeping my brain active during treatment, I have had only minor issues and am seeing the difference from when I went through chemo and now. Good luck to all going thru this now

  • aterry
    aterry Member Posts: 142
    edited November 2019

    I took a class today in crochet. I used to crochet but found I couldn't pick it up again, with the chemo brain damage. In the one-to-one class the instructor was lovely and patient but I found that I couldn't "see" the difference between the stitches. We were working on a VERY simple hat pattern. Just single crochet and chain stitch. When you do the second round you insert the hook into the chain stitch space--except I cannot tell which is the chain stitch space and which is the single crochet space. The lady showed me, like, a hundred times. It's a little like my son's dyslexia. He couldn't "see" the words in a way that let him read. I can't "see" the stitches. At home I'm practicing the stitches with different size hooks and different weight yarns hoping the stitches will become more distinct. These failures in my brain are so confounding. Knitting and crocheting are supposed to be relaxing!

    Ktpittsto I end up in tears a lot. Even today in the little class. When I felt the tears coming on I ended the session.

    rubyredslippers I know that the part of my brain that was damaged is the area that handles processing. My processing is at the 6th %. I don't think they have ways of remediating the damage--not yet. Mncteach I did do games--word games, on-line cognitive games and such. They didn't help. I don't call it chemo brain either (except in this thread--in order to reach out). I call it chemo brain damage. I knew, though, going in that there was a risk of this because my oncologist didn't mince words. I did the chemo anyway because I read my pathology report and it was ugly.

    Brilee76 I can concentrate, but only for a very short time. Even on this site it might take me a couple of days to write a response.

    Marcia111 thanks for commenting.

    Do any of you experience physical symptoms when you try to do tasks? It feels numb or stuffy behind my eyes; behind my ears; my lips get numb; numbness behind my brow. Do any of you feel those things?


  • jackster51
    jackster51 Member Posts: 139
    edited November 2019

    I also am 7 years out of chemo and struggle daily with my mind. I can't read and retain information like before, at all. Can't concentrate. Can't multi task. My memory is blown. It's a daily struggle.

  • vl22
    vl22 Member Posts: 471
    edited November 2019

    I’m almost 2 years out from Chemo. My memory has definitely been impacted. Sometimes I actually find it necessary to tell people that I had chemo because my forgetfulness can be embarrassing.

    I honestly feel like my mind has aged 20 years

  • aterry
    aterry Member Posts: 142
    edited November 2019

    VL22 My oncologist told me, when I mentioned cataracts I developed, that chemo causes premature aging. I wasn't quick enough to ask her how that aging is manifested? Does it effect all systems or some areas more than others? I'm 70 and friends tell me, when I discuss brain lapses, "Well I'm 70, too, and that happens to me." But it's not senior moments. I had senior moments before treatment what I experience now is quite different.

    Jackster51 Multitasking is the worst! My productivity--even in terms of housework--has plummeted.

    I'm still curious as to whether any of you experience physical manifestations? Does it feel like your brain is numb? Like cotton has been stuffed in your skull?

  • vlh
    vlh Member Posts: 766
    edited November 2019

    I've left my car door open twice in less than 3 years since completing chemo compared to once in the 40+ years prior to cancer treatment. Luckily, the car was in the garage, but I missed work due to the related dead battery. (Why does the vehicle turn off my headlights automatically, but lets the battery completely drain without turning off the "courtesy" lights? That hardly seems courteous.)

    Scared

    Aterry, regarding people being dismissive of your senior moments, I recall wanting to strangle people when I would mention how debilitating my Fibromyalgia fatigue was and they would chirp that they would get tired, too. They didn't understand that their tiredness that responded to a relaxing weekend or didn't dramatically impact every aspect of their life to a point of losing one's career and life savings is NOT the same. And don't get me started on "but you don't look sick".

    I've had the "stuffed head" sensation you mentioned, but it started long before my cancer diagnosis and didn't seem to worsen. Fibromyalgia and chemo both affect the nervous system so perhaps that's the commonality? I admit that I was blissfully ignorant about the "collateral damage" associated with cancer treatment until I experienced chemo brain, lymphedema and peripheral neuropathy myself.

    Lyn



  • aterry
    aterry Member Posts: 142
    edited November 2019

    LVH I don't know much about Fibromyalgia except that it is very disruptive to "normal" life and that it is often dismissed. I've read about the fatigue and other aspects but I haven't experienced anything like it. The only pre-existing condition I had (which is lesser than Fibromyalgia) is vertigo. Sometimes I can't tell whether what I'm experiencing is vertigo or the stuffy chemo brain damage manifestation--they can overlap. I had peripheral neuropathy in my fingers and feet but it has gradually, but slowly, improved. I'm grateful to have been spared lymphedema--does that improve with physical therapy? I don't doubt your hunch that the nervous system disruption is the link between chemo brain damage and the other conditions.

    A neuro-psych recommended several mind games on the web site Lumosity: Tidal Treasures, Lost in Migration, Ebb & Flo, Speed Match Overdrive, Playing Koi. I did these games for about 6 months--though I could only tolerate short sessions. They didn't help me but they might help others.

    My memory lapses are much more frequent than twice in 3 years! (though I realize you're putting forth an example of a lapse that had disruptive consequences for you). Do you think your "stuffed head" sensation is from the Fibromyalgia?

  • moth
    moth Member Posts: 3,293
    edited November 2019

    I will offer my experience - which is more positive than what so many people are sadly experiencing.

    I finished chemo in July 2018, started rads in late Aug 2018 and was still doing rads when I started an accelerated bachelor of nursing program. It's a year round program and I'm currently finishing up term 4 (of 9). Yesterday I picked up my Dean's Honour Roll certificate. I'm a straight A student and thriving.

    While so many people sadly experience very negative long term side effects from cancer treatments, I want newbies to cling to the hope that it's not inevitable for everyone. Best wishes everyone :)

  • aterry
    aterry Member Posts: 142
    edited November 2019

    The day I started chemo the Nurse Practitioner told me, "No one gets all of the side effects. You will get some but only some. Most people are surprised at how manageable they are." I didn't get nausea, I didn't get diarrhea, my hair came back, feeling in my hands and feet came back. And I'm still NED. So that is all good news. It's just my brain that's stuck. It's not my intention to be too discouraging but I do want to explore what is going on. That's why it's encouraging that some of the cancer centers are doing research into brain damage from chemo.

  • spookiesmom
    spookiesmom Member Posts: 8,149
    edited November 2019

    This sums it up fairly well image

  • aterry
    aterry Member Posts: 142
    edited November 2019

    Happy Thanksgiving to everyone who posts on any/all the threads and for all the support you provide and share with others. And thanks, Spookiesmom for the laugh, which always helps, no matter where we put it.

  • anothernycgirl
    anothernycgirl Member Posts: 821
    edited November 2019

    ditto what aterry posted!!

    Winking

  • aterry
    aterry Member Posts: 142
    edited December 2019

    I just listened to the pod cast about chemo brain that is featured on the front page of BreastCancer.org. It's about 22 minutes. https://www.breastcancer.org/community/podcasts/chemobrain-20191122 The specialist uses the term cancer-related cognitive decline. I usually say, brain damage from cancer treatment. To me it's more than decline, though I understand her point. I can "feel" the damage which is why I prefer damage to decline. I'm 70 and I was certainly aware of age-related cognitive "decline" even before I was diagnosed. This seems different to me.

    It's helpful just to have the topic discussed and taken seriously. I'll whine a little in that I get tired of hearing over and over that everything would improve if I exercised more. I know this. It doesn't make exercise less hateful. I really hate exercising. I do it every day and I hate it every day.

    I took a second crochet lesson today. I crocheted when I was younger but haven't been able to since treatment. I find it STRESSFUL! Isn't that weird? My instructor is sweet but clearly surprised that anyone would find crocheting stressful. I am hoping, just like the doctor in the pod cast said, that learning something new is a way to help rebuild cognitive reserve. At least I'll get a hat.