CHEMOBRAIN?

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 Hello, ladies! I am a 42 year old university professor in NorthAmerican Literature at a Spanish university, and am currently also reading for a second degree in Psychology. I was diagnosed breast cancer in July, but have so far refused to stop my academic work. Unfortunately, I have only had two cycles of chemotherapy (FEC) out of the 6 prescribed, and have already noticed a considerable decrease in my cognitive abilities, especially attention span, concentration, short term memory, and divergent thought processes. I find it difficult to follow complex argumentations (which did not seem difficult at all in the past), and tire very quickly.

I am extremely concerned and upset about this, and, even though my oncologist has reassured me that all this is temporal, I am very anxious that these effects might be irreversible, and that the cognitive damage might be long lasting.

I am really quite depressed over this issue, especially as it is very unexpected. I had braced myself quite well against most of the things involved in this ordeal (hair loss, nausea, fatigue, fear of death, etc, etc), and felt reasonably confident and positive, but I was really unprepared to have it affect my brain, which is also, incidently, my working tool. I guess it sounds stupid, but it seems like the one little thing that can really undermine me now - I feel like crying like a baby whenever I read a specialized article and realise I cannot follow it like I used to, or when I find it excruciatingly hard to memorize new facts! 

Does anybody have a similar experience of these cognitive side effects or has any information as to whether they really are temporary? 

Comments

  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2009

    Hi, Ditasea ~ Since no one has responded to your question yet (it's Thanksgiving here, so the boards have been understandably quiet), I'll share my experience. 

    I finished 4 rounds of Taxotere & Cytoxan a little more than a year ago, and, although I had been assured that chemo brain is mostly complained about by mathmeticians, engineers and other highly cognitive people (which I'm not), my chemo brain was frustratingly noticeable for several months -- like not being able to remember words (especially names), and forgetting things beyond normal forgetfulness.  Thank goodness, in the past month or two, there seems to be a significant improvement.  So I would say, yes, it's temporary; but in my case it did linger on for several months after treatment ended.    Deanna 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2009

    Ditase, so sorry you are going through this.

    While many people report chemo-brain during chemo, there are some people for whom it lingers. The studies vary, I've read 15-30%.

    There is a lot of controversy over this, a lot of doctors feel the effects involve other factors, the hormonal effects of treatment, stress, etc.

    But there is certainly a lot of anecdotal evidence that patients report a real problem.

    There is one study out of Stanford, which indicates chemo lowers frontal lobe brain activity. But it just involved 28 people, the 14 women all had mets, so there could be other factors at play.

    There is one theory that some people may be more genetically vulnerable to chemo brain as well.

    There are some good articles about this at NY Times.com, and there are two books out, one is called something like, your brain after chemo.

    Unfortunately I think the medical community is a bit slow on this, their focus is on saving lives, more than side effects.

    I read one article that says about 25% percent of "chemo brain" cases are actually caused by the chemo.

    But it is your brain, it really doesn't matter what the stats are or if it is chemical, genetic, or psychosomatic.

    I wish I had something more reassuring to say. Good luck and let us know what your doctors think.

  • Ditasea
    Ditasea Member Posts: 27
    edited December 2009

    dlb823 and cookiegal, thanks a million for responding!!

    dlb823, your experience is reassuring. So long as the effects do eventually wear off, I think I can handle it!! I´m just worrying about it being permanent, specially as regards my job.

    Cookiegal, thanks for the references. I will check NY Times.com! My onc says is more the result of stress than chemo, but there is a point I´m not sure about: if chemo does NOT cross the hematoencefalic barrier (I´m not sure that´s the name in English, sorry!), and therefore is not accountable for chemobrain, then chemo can´t really be effective to prevent brain mets, can it? And if it DOES cross the brain barrier (Avastin, for example, is known to cross it, as opposed to Herceptin), it must damage neurons, just as it damages other healthy cells in our bodies, mustn´t it? Probably, it will damage neurons more than it damages other cells, as neurons are extremely sensitive to chemical components.

    Of course I understand the focus is, and must be, on saving lifes... but it is so deppressing to have to pay so many prices for keeping your life safe!! Bloody cancer!! 

  • bluedasher
    bluedasher Member Posts: 1,203
    edited December 2009

    Ditasea, chemo acts on cells when they are dividing - that is why many of the side effects are on the parts of our bodies with faster growth - hair, blood cell production, mucous membranes and such. Therefore, neurons should be safer from the direct effect of the chemo drugs than other areas even if it does penetrate the blood brain barrier. However, chemo also messes with red blood cells and sometimes hydration and chemical balance in our blood. Maybe that causes some of the temporary mental fog.

    Chemo brain was the one side effect that made me consider not getting chemo since my life's work is very dependent on my ability to analyse complex information and multitasking. But being HER2+ the recurrence risk was too high to do without it. 

    I am an engineer and my onc said the opposite of what Deanna was told - she said that she doesn't see chemo brain problems in people who are as focused as me. I don't think they really know - they haven't done that many tests on it and I think it is usually a subtle effect that an onc wouldn't notice during an appointment. 

    I've been very pleased to find that I've survived chemo without any decrease in my ability to do my job. I've always had some deficit in ability to remember people's names (especially when under stress) or forgetfulness - I haven't noticed it getting any worse.

  • dlb823
    dlb823 Member Posts: 9,430
    edited December 2009

    Bluedasher ~  That's kind of amusing that our oncs gave us entirely different perspectives on who gets chemo brain.   Do you think maybe they size us up based on what we do for a living (I'm artsy/designery), then intentionally assure us that it's "the other group" that gets chemo brain, hoping it will curb any psychosomatic symptoms?   But I do know that both UCLA and Stanford were doing research on it this year, so hopefully, we'll get some answers when those results are published.

    I also wanted to comment on the multi-tasking, which was another very noticeable SE for me.  In fact, I would get extremely frustrated with something as simple as receiving two streams of info' at once, like someone talking to me while the TV was on.  I just could not process it.  But that's also improved greatly in the past couple of months, and may have been more stress-related than chemo-induced.   Deanna

  • HairSprayMom
    HairSprayMom Member Posts: 251
    edited December 2009

    Hi Fellow Chemo Brain Sufferers,

    I had dense dose chemo 4 AC and 4 Taxoteer/cytotoxin and finishe 3-21-08 and chemo brain has been one of my major problems post treatment. I still forget things easily and sometimes loose the thread of a conversation if I don't really concentrate. I am a Cartographer and it really doesn't seem to affect my accumulated knowledge, just the day to day thinking. Bless my children, they answer to whatever name I call them HAHA and haven't taken advantage of my forgetfullness too much..at least I don't remember it if they do. LOL My solution is a planner, if I write it down I seem to remember it better and I can refer to it when I don't remember.

    Love to all,

    Regina

    AKA HairSprayMom

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

     this has become the number one factor in my chemo decision (besides the cancer of course)

    it also seems plausible the hormonal aspect also impacts concentration.

    I think doctors have a tough time saying this is a mystery!

    It's funny my doctor said, since I already have a LD, I already know how to compensate.

    I don't find that so comforting.

    One MD (not cancer related) said at the end of the day you will have to decide without hard information.

    The good news is for most this appears to go away within a few years. The bad news is for a fraction (15-20?) it can last up to 10.

  • lionessdoe
    lionessdoe Member Posts: 780
    edited December 2009

    I guess I'm lucky that I don't have to rely on research or expert analysis regarding the existance of chemo brain. I was scheduled for 19 infusions. After only three A/C, I started having episodes of confusion, dizziness and sudden feelings like I was about to pass out. My husband would literally hold my limp body up and keep talking to me to keep me stimulated while I waited for the overwhelming weakness to pass. I felt as though my brain was bathed in chemo. I remember one night when supportful friends came by to visit. I sat there smiing when every one else smiled, laughing when everyone else was laughing, knowing full well the entire time I had no comprehension of what anyone was talking about. I had a brain scan prior to chemo to check for METS. I demanded a brain scan after the third infusion, still concerned that METS explained that evening and all my other cognitive difficulties. Conclusion? Chemo had passed the blood brain barrier and thickened my white matter and cause me to have TIA's. There has been improvement with my cognition. But three years later I still struggle with everything you mentioned. You can't erase a TIA. I rely on compensatory strategies now. Ten years is a long time and I am 56 years old. I could very likely be suffering from demntia by then and it will be impossible to separate the two cognitive declines. Personally I don't really think that chemopause and all the hormonal variables are all that relavant! If chemo brought them on, then to me, it is still chemo brain!

  • AsiaYM
    AsiaYM Member Posts: 2,216
    edited December 2009

    Hi, Everyone,

    After reading all the posts here, you are the least chemo brain affected people I know, you still can think straight, I mean, logical.  Others are dealing with emotion breakdown, racing thoughts, negative and low self-esteem, and immobility to do anything and, then, to top it off, they wrapped themselves up with sad stories.  I think, you ladies here, chemo brain will be short lived!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    I decided not to do the chemo. I think my onc was ok with the decision (2-4%benefit is not a home run), but he took real issue with potential chemo brain being a factor.

    Cest la vie!

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