• How many people have experienced "Chemo Brain" and when did it start?

    Asked by Kossmore on Saturday, December 29, 2012

    How many people have experienced "Chemo Brain" and when did it start?

    Did you talk to your doctor about it?

    19 Answers from the Community

    19 answers
    • janeti's Avatar
      janeti

      After my treatment for Stage IIIb breast cancer 10 years ago. Symptoms started as soon as I returned to work or tried to resume my regular routine. I still have difficulty conducting a spontaneous conversation and remembering info, but then again I'm 73

      over 4 years ago
    • nancyjac's Avatar
      nancyjac

      It started right after I started chemo and has become progressively worse since then. I finished chemo 9 months ago. I have learned various coping techniques for short term memory loss but the communication gaps are really frustrating. I randomly have times in the middle of a conversation or when I am writing that I can't think of a common word (or how to spell it) or forget a person's name even if I have known them for years. I also occasionally forget how things work that I do routinely like opening my camera to change the battery, using the TV remote, etc.

      My oncologist is aware that I still have chemo brain as a side effect but there is no treatment for it. I'm just hoping at this point that it won't get any worse.

      over 4 years ago
    • SueRae1's Avatar
      SueRae1

      yes, I had mild chemo brain while on Sutent and Afintor, which were the meds used to tread my advanced renal cell carcinoma, it started about 6 weeks after I took my first pill. I started infusion therapy in May to treat both by renal cell and Metastasized breast cancer. The day after my first treatment, I had a really really bad case of chemo brain, it lasted about 4 days.

      Now I have bad chemo brain for about 2 days after each treatment and low grade chemo brain most other days.

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      I'm more absent minded since chemo, not sure if it ever goes away.

      over 4 years ago
    • Nomadicme's Avatar
      Nomadicme

      I've read that the panacea to just about all that ails us is exercise. Perhaps it can make chemo brain better? It certainly is protective against neurological diseases.

      over 4 years ago
    • Debbie's Avatar
      Debbie

      Chemo brain started after first treatment. Now there is a huge gap between my brain and mouth :) . Treatment ended a month ago but no improvement yet.

      over 4 years ago
    • SpunkyS's Avatar
      SpunkyS

      I had a mild case of chemo brain after about 4 months of chemo. Once in while I still have some minor "forgets" but I don't think it is all chemo brain. I am told that I am funnier than I was before. Think the chemo rewired some brain functions and I see humor in lots of things and then say it out loud.

      over 4 years ago
    • karen1956's Avatar
      karen1956

      Yes, yes, yes!!!! after my first chemo.......

      over 4 years ago
    • Nancebeth's Avatar
      Nancebeth

      Mine started after my first chemo treatment and I still kind of have it even though chemo has been over for a few months.

      over 4 years ago
    • Kossmore's Avatar
      Kossmore

      Thanks for answering my question, I don't feel so alone. I do not remember when it started, only how frustrating it is and the fact that my family dosen't understand what it feels like. Even my friends don't get it, they forget and expect quick responses.

      I have a major problem with it even after 7 years of completing the treatment. My issues are memory loss, attention, losing thoughts, understanding basic how to do something and so much more. I cannot do the same type of work I have done for the last 30 plus years because of the fast pace, the details and communication. I have been in upper management for many years including being the dean of a small college. Even secretarial work is difficult for me now. The chemo caused brain damage and the doctors say it will get better! How long do we have to wait? I had brain scans and they showed nothing wrong. However, last year when I had some testing done by a Clinical Neuropsychologist, she said I could benefit from ADD medication. My family doctor started me on Ritalin which did nothing. Then we tried Vyvanse and what a difference. Compared to before the Vyvanse I'm much better, compared to pre-cancer, well not back to that point yet.

      I have also started taking vitamin d-3, B- complex and Omega 3 supplements which have also helped. If I miss a dose of any of them, it is noticeable. Wheat germ is also supposed to be an overall medication for almost every medical problem.

      over 4 years ago
    • JennyMiller's Avatar
      JennyMiller (Best Answer!)

      I am not quite sure when the "Chemo Brain" actually arrived -- I was in such a whirlwind during chemo or as I refer to it -- my "twilight zone" -- but I began to realize that I had to search my brain for a word that I wanted in the middle of a conversation thus a noticeable and embarrassing "gap" -- then I would find myself repeating something that I told someone just the day before so I have learned to ask now "Have I told you -----?". I have left ingredients out of recipes -- I will think of something that I need to do and forget it a few minutes later -- the "walking in a room & forgetting your mission" syndrome!! Long term memory seems to be intact -- I am thankful for that because I have so many memories to cherish. I have always taken supplements including the B-Complex and Omega 3 - and I think they may have helped in my other skills. I was a Corporate Business Manager -- always loved working with numbers -- multi-million dollar Budgets and Financial Reports, etc. I can still work with numbers without a calculator -- and I still have all my account numbers, user id numbers and passwords memorized. I look at it as a test - the day that I cannot remember my Discover Acct number to input on computer, then I will most likely get very scared!!! (I do Soduko, Crossword Puzzles, Word Jumble & Cryptograms in an attempt to keep the brain exercised) As for the "gaps" & social awkwardness, I am starting to not care -- it has been a rough road for me and if my family and friends cannot have patience with this lingering effect, then it is just too bad --- "Love me as I am or not at all!"

      over 4 years ago
    • Nancebeth's Avatar
      Nancebeth

      I was already taking Adderall for my ADD and so I may have blamed some of the "chemo brain" effects on the ADD, but it was definitel there and different than my ADD symptoms. I was just a hot mess :-)

      over 4 years ago
    • oceanblue24's Avatar
      oceanblue24

      I had chemo brain during my chemo but it got progressively worse after going on the Arimidex. I not only have short term memory loss but some long term as well. I watched a movie last night that I had watched a yr. ago & some parts were new to me. It's so frustrating!!! I have little tricks like post its & my husband gives me hints & then it comes rushing back to me but I'm learning to live with it.

      over 4 years ago
    • DorothyV's Avatar
      DorothyV

      Mine started after my first treatment and has been progressively worse. My family has been very patient and we've learned to laugh. One time I told my husband "We'll bridge that cross when we get to it!" I am 4 months out from chemo and still have it!

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      @oceanblue24 It's funny you should say that about watching movies. I will be sitting in the living room watching a movie and my wife will come in and ask what I'm watching, I tell her, she will then tell me I've already seen it. I had no clue I had watched it. So I just ask her, did I like it?

      over 4 years ago
    • debco148's Avatar
      debco148

      It seemed to hit right away after the first treatment. Still after 4 months, I recognize the effects. Sometimes, I'm just sort of numb all over, especially when tired. I remember my Dad after having a stroke had issues where he couldn't find a word he was trying to get out. It was so frustrating for him. I attended a seminar they had for families of stroke patients. They explained how therapy works by forcing other pathways in the brain to compensate for the "dead" spot left by the stroke. So, I started to apply this to myself and decided to challenge my brain every day. What I find works best is forcing myself to work on coordination of the body. Either playing a quick reaction game on the computer or even better dancing. It forces the brain to send the signals to the body to react or move a certain way. This then helps overall brain function and spills over to memory and communication. It is not yet perfect, but I think I'm on to something. I noticed this past week when I had a bad cold and couldn't go to Zumba, that the fog was coming back. So as soon as I could I went right back to it. I also take D3 and B6 vitamins at the suggestion of my oncologist and they do help. All doctors will tell you this is definitely a real thing that happens to all of us that went through chemo. Just keep challenging yourself everyday, it won't be perfect, but you'll get your old self back. One thing we all gain through this stuff is patience and we have to apply it to ourselves!

      over 4 years ago
    • KimG's Avatar
      KimG

      Yes absolutely and a lot of times people aren't very understanding. The short term memory or like nancyjac answered trying to think of a word you need to use, the usual walking into a room and knowing you came there for something but what? Then you walk back out and it comes to you. Like I said before I am having a terrible time with jobs because I'm just not the same in my profession as precancer. kimg09

      over 4 years ago
    • Kossmore's Avatar
      Kossmore

      The chemo brain thing just is not getting better, I just realized I'm in year 8 with this stuff. Will be losing my new job because there are too many things to remember, and too many different but similar cases to work with. Had a painful long talk with hubby this weekend, he agreed to let me stay home for a while and he would help me find some kind of a job or volunteer work to do. We did this same thing several years ago but he forgot he said it and would not geive me money, he supported me but no spending money! Really scared because if I can't communicate well and remember things what will happen to me? The oncologist, my family doctor and a neurolygist have all just blown me off as if I'm mentally ill! It is very embarassing when the people you work for have to continually tell you how to do something, in front of other coworkers and customers. I'm to the point I cannot stand up for myself because no words come to mind st say when someone is giving me a hard time, not even later on when away from the situation. Who wants to be like this? Nobody asks to have cancer!

      over 4 years ago
    • DaveWaz's Avatar
      DaveWaz

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

      Blame it On the Chemo Brain - Tips and Tricks for Coping
      http://www.whatnext.com/blog/posts/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.

      David

      about 4 years ago

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