Chemo brain?

Jennifer1961
Jennifer1961 Member Posts: 137
edited March 2014 in Breast Cancer #1
HI everyone. I'm going to be starting TAC a week from Friday. Although I'm still worried about the side effects such as fatigue, nausea, etc, I can deal with it. What I'm really worried about is the long term effects. I know there is a slight risk of heart damage, which I can accept, but I've been reading that cognitive problems are very common among chemo patients. Some say they can last up to 10 years or more. Anyone have any experience with this chemo brain problem?

Comments

  • Mariannemm
    Mariannemm Member Posts: 136
    #2
    My Brain
    My husband and I have both noticed that I am showing signs of chemo brain. I had 4 rounds of AC and I am currently on Taxol. I have had 10 rounds of weekly Taxol and have 2 more to go. I have a hard time remembering words, my head feel cloudy and my husband can see I get frustated with expressing my thoughts. We have noticed this over the pass couple of months. I started my chemo on Feb. 1st, so it took a couple of months to set in. I have no problem taking care of the house, our 2 kids and working a couple of days a week. I am just not as driven as I used to be. I need breaks to rest, my brain seems slower in the morning and evening. I feel my best between 10am-7pm.
  • GregStahl
    GregStahl Member Posts: 188
    #3
    I have read/heard
    of personality changes as well. Any thought from anyone on that?
  • tgf
    tgf Member Posts: 950 Member
    #4
    Mariannemm said:

    My Brain
    My husband and I have both noticed that I am showing signs of chemo brain. I had 4 rounds of AC and I am currently on Taxol. I have had 10 rounds of weekly Taxol and have 2 more to go. I have a hard time remembering words, my head feel cloudy and my husband can see I get frustated with expressing my thoughts. We have noticed this over the pass couple of months. I started my chemo on Feb. 1st, so it took a couple of months to set in. I have no problem taking care of the house, our 2 kids and working a couple of days a week. I am just not as driven as I used to be. I need breaks to rest, my brain seems slower in the morning and evening. I feel my best between 10am-7pm.

    chemo brain
    At first I thought "chemo brain" was just an excuse to use ... but as my chemo treatments progressed I realized it was VERY real! There were times when I got so frustrated trying to find the words I wanted that I thought I was losing my mind. I finished chemo about a year ago. I was 65 then and was terrified of alzheimers ... but thank goodness for this website because I realized it truly was a side effect of chemo. I continued to work full time throughout my chemo and I spend a lot of time at the computer. I remember one day I spent about 10 minutes looking for the question mark on the keyboard. I was almost in tears and had to go to the bathroom to pull myself together. When I got back to my desk I immediately got on this discussion group and expressed my fears and frustrations. I swear ... in less than a minute I had people getting back to me with support and reassurance that I was OK and this was "normal" for chemo therapy patients ... and then they'd share their experiences. Some were sad ... and some were very funny ... but it really helped me through a tough spot.

    I wish I could say I feel like I've got the same "brain power" I had before chemo ... but I don't think so. It's only been a year ... and I am much better ... but the most important thing is that I realize what "it" is and I accept it ... and deal with it.


    hugs.
    teena
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #5
    GregStahl said:

    I have read/heard
    of personality changes as well. Any thought from anyone on that?

    Just plain cancer brain
    I think there is rad brain, chemo brain and just plain cancer brain. Being diagnosed with such a life threatening disease, and, considering all that we go thru to fight it, leads to changes, not only in our bodies, but, changes in and to our minds. I have also always thought that PTSD is what can happen to many. So, just be kind to yourself and know that some things might change, physically and emotionally, but that you are fighting the beast and you will still have a happy and long life. Take care!


    Hugs, Debby
  • bluwillo
    bluwillo Member Posts: 113
    #6
    LOL!
    Yes, I believe chemo brain is real, but for me, it was an in/out sort of thing. During DX, surgeries, chemo and rads, I also was going to college full time, on an accelerated schedule. I was worried about keeping up with my classes...no problem there. I only missed 3 classes, I'm pretty surprised about that. And in class, I was "all there"...except for one class that was the day after Neulasta..my classmates and I decided that was my "Sybil" day. So, no real chemo problems for work (I work full time too) or school.

    Sure, I'd have an occasion or two where I couldn't think of a specific word, but I'd be able to talk my way around it. No big deal.

    And then, it happened. It happened so bad it made me cry. What was this horrendous occasion upon which I could not rely on my memory? I was mopping the kitchen floor (I guess DH never got the memo about helping with the housework) and watching an old movie. I watch tons of old movies, prefer them to new. Well, there was this lady in the movie, I knew she was famous, I knew she made many great movies...and I knew her name was Betty.....Who? I could not remember her last name! I remember being so frustrated I almost threw the mop thru the door. I kept saying "But I know this stuff! I know this stuff!!" It took me 15 minutes to remember her last name...Davis!!

    That is the day I realized chemo brain is real, and I'd better stop using it as an excuse for forgetting to buy bread at the store. But, I also realized that it's like practice for getting old. It gave me a new perspective and much more empathy for my MIL, who has Alzheimers. And, I realized that it comes and goes, and, just like everything else about this stupid disease, the first time is always the worst time. I know now that I may not be able to use the word I want, but I can work around it. I know to actually use my darn date book, instead of relying on my memory. I"ve also noticed that since I finished chemo, the "holes" in my head happen a lot less frequently.

    I just thought it was pretty funny for God to allow me to get all A's in school, but bust me totally on a Betty Davis movie! He knows what's really important. :)
  • Marcia527
    Marcia527 Member Posts: 2,729
    #7
    yeah, I had chemo brain
    yeah, I had chemo brain during treatment and at times after but now don't have it much. I think when I can't think of a word it's just I can't think of it. I don't think it's chemo brain anymore just a gap. One strange thing that happened during chemo was I stated my brother was in the navy when he was really in the air force and I had a visual picture of him in navy uniform when I said it. After I was corrected I knew I had been wrong but wondered at having the visual in my head or saying it at all. Weird!
  • Marcia527
    Marcia527 Member Posts: 2,729
    #8
    GregStahl said:

    I have read/heard
    of personality changes as well. Any thought from anyone on that?

    I had no personality
    I had no personality changes. I was more tired and would fall asleep in a chair or not say much because I didn't feel well but really was the same personality.
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #9
    Jennifer -
    I am getting ready for my last round of CT (#6) and can't say that I have noticed it a lot except for right after chemo and my Neulasta injection when I am mentally foggy. I had one day I was going and looking for the Advil and looked in the refrigerator. After that, every mistake my husband makes, he tries to blame on me (as a joke) and tells me that I just don't remember it. And then gorans that if I did it, at least I have an excise. I was already making lists before and occasionally having to think around a word so I can't really say that chemo has made it any worse. I have continued to work full time and still seem to be performing at the same level and getting as much done.

    Greg - I have heard of personality changes, too, but I'm not sure how much you could distinguish it to be from the chemo vs. the change in life circumstances (although I'm sure if someone has experienced that, they will chime in). I would say that I have changed - I am more patient than I used to be, less obsessive about work (which my employees probably appreciate) and more appreciative of my life. I don't think it is the chemo - probably justa long needed awakening that put life in perspective for me.

    Chris
  • bluwillo
    bluwillo Member Posts: 113
    #10
    Marcia527 said:

    I had no personality
    I had no personality changes. I was more tired and would fall asleep in a chair or not say much because I didn't feel well but really was the same personality.

    LOL!Marcia, the title of your post!
    I thought your post was going to say you had no personality before chemo, but chemo gave you a personality!!! If that was the case, I would want to know what kind of chemo you had, so I could get a nicer personality!!
  • seof
    seof Member Posts: 819 Member
    #11
    Chemo brain is a real
    Chemo brain is a real phenomenon. They have been able to record the changes with MRI and other brain imaging technology. It is very fascitnating to me. They can actually see the physical effects of what patients have experienced for years! Unfortunately the specifics of how those changes will affect a particular individual in everyday life are unprdictable as yet. They also cannot predict how long the effect will last on any specific individual. I think my own memory for names and daily tasks is better than during chemo, but not as good as pre-chemo. I have learned to use "to-do" lists and to insist that others write down anything they want me to do, no matter how mundane it seems. I have also learned to stress less about what I forget. Stressing about the fact that I forgot has never helped me to remember the next time, so why spend the energy? I just have to accept that aspect of the "new me" just like I have to accept the surgical scars. Hey, at least I am still here to talk about it, right? The potential effects of chemo brain are much easier to live with than the potential effects of not doing chemo, so just do it and move forward.

    Live as well as you can for as long as you can. seof
  • Marcia527
    Marcia527 Member Posts: 2,729
    #12
    bluwillo said:

    LOL!Marcia, the title of your post!
    I thought your post was going to say you had no personality before chemo, but chemo gave you a personality!!! If that was the case, I would want to know what kind of chemo you had, so I could get a nicer personality!!

    OMG! I didn't read the
    OMG! I didn't read the title! I'm going to have to proof read better! Anyone who knows me knows I've got lots of personality. some would say I'm full of it (I won't say what).
  • Marcia527
    Marcia527 Member Posts: 2,729
    #13
    seof said:

    Chemo brain is a real
    Chemo brain is a real phenomenon. They have been able to record the changes with MRI and other brain imaging technology. It is very fascitnating to me. They can actually see the physical effects of what patients have experienced for years! Unfortunately the specifics of how those changes will affect a particular individual in everyday life are unprdictable as yet. They also cannot predict how long the effect will last on any specific individual. I think my own memory for names and daily tasks is better than during chemo, but not as good as pre-chemo. I have learned to use "to-do" lists and to insist that others write down anything they want me to do, no matter how mundane it seems. I have also learned to stress less about what I forget. Stressing about the fact that I forgot has never helped me to remember the next time, so why spend the energy? I just have to accept that aspect of the "new me" just like I have to accept the surgical scars. Hey, at least I am still here to talk about it, right? The potential effects of chemo brain are much easier to live with than the potential effects of not doing chemo, so just do it and move forward.

    Live as well as you can for as long as you can. seof

    Hey seof
    Have you tried some of those brain improvement/memory games? Puzzles? I think things like this really helped me to regain brain activity. Except for the above thread I posted with title goof. Oh well. I never said I was perfect.
  • bluwillo
    bluwillo Member Posts: 113
    #14
    Marcia527 said:

    OMG! I didn't read the
    OMG! I didn't read the title! I'm going to have to proof read better! Anyone who knows me knows I've got lots of personality. some would say I'm full of it (I won't say what).

    Oh, I wasn't meaning that I
    Oh, I wasn't meaning that I wanted a nicer personality than yours, yours seems good to me!
    "Yeah, and I'll have a side order of Marci's personality along with all that T&A in the funny little bags!"
  • bluwillo
    bluwillo Member Posts: 113
    #15
    Marcia527 said:

    OMG! I didn't read the
    OMG! I didn't read the title! I'm going to have to proof read better! Anyone who knows me knows I've got lots of personality. some would say I'm full of it (I won't say what).

    Oh, I wasn't meaning that I
    Oh, I wasn't meaning that I wanted a nicer personality than yours, yours seems good to me!
    "Yeah, and I'll have a side order of Marci's personality along with all that T&C in the funny little bags!"
  • carkris
    carkris Member Posts: 4,553 Member
    #16
    Marcia527 said:

    Hey seof
    Have you tried some of those brain improvement/memory games? Puzzles? I think things like this really helped me to regain brain activity. Except for the above thread I posted with title goof. Oh well. I never said I was perfect.

    I definately have chemo brain
    I forget words especailly my train of thought. It does seem better but sometimes I feel like I'm in a fog. I have had personality changes but thats more from the diagnosis, and being more assertive etc... I also feel more edgy since starting tamoxifen. I think it is multifactorial, hormonal shifts, chemicals, anesthesia, stress, sleep disturbances. It 's a wonder its not worse.
  • Jennifer1961
    Jennifer1961 Member Posts: 137
    #17
    Thanks everyone. I feel
    Thanks everyone. I feel much better. Like it's not bad enough that we have something that can kill us, but the meds can cause serious damage too. Sometimes I just can't absorbe the severity of my situation (excuse my spelling errors).
  • New Flower
    New Flower Member Posts: 4,294
    #18
    Jennifer1961 said:

    Thanks everyone. I feel
    Thanks everyone. I feel much better. Like it's not bad enough that we have something that can kill us, but the meds can cause serious damage too. Sometimes I just can't absorbe the severity of my situation (excuse my spelling errors).

    most medical oncologists refuses to discuss Chemo brain
    however they do not want you to drive on the day of infusion. Multitasking will be affected., but you can recover after treatment is completed. Do not worry too much.
    Good luck with your Chemo

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