Chemo-Brain

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  • Lori0118
    Lori0118 Member Posts: 13
    edited December 2007

    Is anyone having memory problems after several bouts with Chemo?  I read somewhere online about a clinic that deals with the long term side effects of cancer treatments.  It said people are now living longer with cancer and they (at this clinic) are dealing with the long term side effects.  One of them was "Chemo Brain".  Some signs of this is loosing your train of thought in the middle of a conversation.  Knowing what you are trying to say but cannot find the words.  Looking for a specific word, you even know the first letter of it but for the life of you, you cannot figure it out.  This happens to me all the time.  Actually I thought I was going a little crazy.  Is this happening to anyone else?  I have been on Femara 3 years.  Had Avistan (Spelling?) last december and am ready to start Xeloda dec. 31st.

  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited December 2007

    Hi Lori,

    I think the reason no one has responded to this yet is because they probably just read your post and were thinking "yea......" and then forgot to post!!

    Chemo without a doubt, affected my memory.

    Good luck girl.

    Traci

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    I've had trouble with this and also trouble while on the hormone drugs taken to fight ER+ status. If you use the 'search' and type in chemobrain, or hormone brain or hormonalbrain, our threads should pop up. There's a bunch of good reads on this under the hormone topic too.



    I'm sorry this is troubling you. It's frustrating to find you can't remember a word in mid sentence, or write a simple word and then stare at it for x minutes, trying to figure out if it's six letters go together right. Until you have it, it's almost impossible to give an adequate description.



    I liken it to a "blanking" of the mind, like it shuts down for a little. Immediate short term memory, as in, did I just take that pill or not, is a good example, and in some ways, a frightful example. Pill boxes surely do help should you not have one yet.



    Good luck, and post back should you wish. We're listening.

    Tender

  • Lori0118
    Lori0118 Member Posts: 13
    edited December 2007

    you got a chuckle out of me Traci...lol

  • redlinda
    redlinda Member Posts: 4
    edited January 2008

    I am almost a year past my chemotherapy and I am STILL having problems with chemobrain. It gets me into so much trouble especially at work (I am the secretary in a small office). My boss is becoming impatient especially since my last treatment was so long ago. I have found if I try to fight it, it gets worse AND I have found that I am emotional during that time too. Is there ANYTHING that my doctor can do to help?

  • TerryNY
    TerryNY Member Posts: 603
    edited January 2008

    I finished chemo late Sept '07 and my chemo brain has been awful lately.  

     I even forgot my son's new girlfriend's name recently....the 'funny-sad' part is, it's the same as mine...sigh....

  • redlinda
    redlinda Member Posts: 4
    edited January 2008

    I know. During Christmas my son and his wife were home for the holidays. I was so stressed out. I sat in a chair and I couldn't remember if I was going out of the room or if I just came in. Sometimes I sit at a stoplight and I wonder if I am going straight or if I need to turn. When it gets that bad I ask someone else to drive. I have tried to make it funny. But, lately it hasn't been funny anymore.

  • Traci-----TripNeg
    Traci-----TripNeg Member Posts: 2,298
    edited January 2008

    Talk about a chuckle....TerryNY's post made me laugh out loud! I'm not laughing at you TerryNY...I'm laughing with you!

    redlinda, I feel your pain girl. I have an office job too of sorts. I work out of my house but, I am in sales where follow up is everything. I've got three words for you girl: keep a list! I write everything down. If it's something I need to do, I put it on my to do list. It REALLY helps.

    Last night I was talking to a friend just before going to sleep, I was in bed. She asked me to email her something the next morning  and so I got up, went to my home office and put it on my list.

    Regarding your second post....sorry but, that one made me laugh too especially the part about not knowing whether you were going out of a room or just came in!! That happens to me all the time. I'm walking and all of the sudden I stop and have no idea what I was doing.

    Your right though, it is really not funny. (Though if we can't laugh at it sometimes.....) I forget entire phone conversations. It's like I've started to precede every thing I'm about to say with "Did I already tell you......?" It does get very frustrating at times.

    Lori, you getting the fact that you're not alone!!??

    My little sister had chemo 9 years ago and I'm sorry to tell you guys that although her memory has gotten better, it is not what it use to be. She still writes stuff down. She's o.k. though!!

    Hugs, Traci

  • TerryNY
    TerryNY Member Posts: 603
    edited January 2008

    Ha, Traci, you couldn't have possibly laughed as hard as I did when I asked my husband the question, "Now don't laugh, dear, but what is X's girlfriend's name...?"and then heard the answer.  He thought I was kidding and the look on his face was priceless.  I really had him stumped...ha.  I knew it started with a "T" but kept thinking "Tina'.  

    You're right about keeping lists, I write down EVERYTHING.  

    My twin had bc 15 years ago and she still has memory losses too.  It's better but not 100%...of course, age could be a factor too...for her only, of course.  LOL

  • snowyday
    snowyday Member Posts: 1,478
    edited January 2008

    Chemo brain isn't it a joy, I offered a plate of bandages to someone at my bd party and honestly thought I had said chips, I even went on to talk about how different they were from regular chips (they were fruit chips).  And you ladies are right I've also learned to write things down, but the hard part is going from one room to another I always forget what I want in the other room until I sit down and realize shit I wanted my reading glasses, I do this three or four times in a row some days.  Terry is so right keep lists.  The next thing I'm going to get is the 30 second key chain tape recorder and wear the thing in the house so I can push the replay and not have to get up 3 or 4 times constantly.  And Terry I was wondering when it will go away but if your sister still has it after 15 years, the list is going stay always.Pearl49 (I think?)

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Ok let me put a different spin on things...

    Take someone who is single mindedly thinking about something (lets say racing cars..) for at least 6 months(more like years) to the point of clinical obsession, all they can think about are cars. When they eat they think about cars, when they sleep the last thing that comes to their mind are cars/racing,.. when they are in the movies all they see are the cars and their performance... Everything else becomes pretty unimportant for them.. as far as they are concerned as long as they can race a car really fast nothing else matters.. (symbollizing beating the bc sh..t) - ask yourself how many times do you visit this site during the day ? ( I think personally I visit it at least every other hour if not more when I am in front of the pc)

    .

    Now in their daily thoughts that person will not be 100% committed to whatever they are doing(unless it is cars) even if they  think they are focusing on something else(conversation, cooking, working .. ) there is this subconscious voice that is actually hogging everything creating almost a static noise in the background..thus things get messed up cause we are actually not applying ourselves .

    .

    Think about the characterized crazy professors  who do really stupid things, is there something wrong with their brains ? Probably not, but are they just obsessed about their subjects .. you bet they are. Does everything else kind of lose importance and becomes silly details that they really do not think is important..yup ! 

    .

    Also admit that after we got diagnosed with BC the expectations of the society might be lowered from most of us.. cutting us a bit of a slack and making us relax for a while.. thus the loss of efficient acting/planning like loss of the skills that we had developed in decades.. we were more like a record played at 33 rpm instead of 45 as it was intended.

    .

    And c'mon I remember doing sillier things during specific times  my life was really hectic before chemo don't you ?.. like forgetting where I was heading to while driving on the highway for a minute.. or putting the car keys in the freezer.. ohhh and at one point I was obsesses about dieting/food, I submitted a document print from my pc, headed to the office kitchen ( which has the printer too ) and was looking for the printout in the fridge.. that one was priceless !!!!,trying to get the car key into the ignition.. wondering why it will not go in until I realize that there actually is another key in and I am trying to force the spare one in on top of it !!!

    .

    Of course now 'Chemo Brain' is a great excuse that I personally  use to send the hubby to the grocery store 3 times a day ( shhhh I hope he is not snooping around this board), but in reality I am just not focused on what I need now and do not care that much, not that I forget I simply am not as efficient organized as I was in last July.

    .

    There probably is such a physiological change as  Chemo Brain but I think that by showing a conscious effort to get back to where we are we might be able to  claim back at least part of what we might have lost.

     .

    Sorry if I offended anyone.. this is my personal take on Chemo brain.. and yes I do have it .. but I think I can work it away.( majority if not all of it )

    .

    Aylin - heading towards the Sudoku pile to do some brain workouts and maybe finding some How to Learn Spanish cd's.

  • trigeek
    trigeek Member Posts: 916
    edited January 2008

    Oh and as my 92 year old grandmother who still lives by herself independently tells me.

    "Honey you can AFFORD to say that you lose/forget something no one will think that something is wrong with you( before my dx), but if I lose/forget something they immediately think that I am senile.. so I CANNOT AFFORD to make any mistakes"

  • snowyday
    snowyday Member Posts: 1,478
    edited January 2008

    Hi trigeek: In some ways your right, I do remember doing silly things, putting the coffee pot in the fridge and wondering where thehell it was, forgetting the car keys, always, usually it was because I was rushing around getting ready to go to the office or had a date, something else on my mind.  So your post got me thinking maybe just like race cars, I'm thinking of cancer to often, so I'm going to try something and it won't be easy. I'm going to mentally say stop everytime I think of cancer and see if I can control it.  This is supposed to work for any negative thinking sort of like the elastic on the wrist, snap it everytime you think negatively.  What the hell I'm bored so I might as well give it a try. Who knows it might help with chemo brain. And I love what your grandmother said, "I CANNOT AFFORD to make any mistakes.  And I am sick of forgetting things, names especially.Pearl49

  • OrenAmir
    OrenAmir Member Posts: 2
    edited January 2008

    Here is Israel there have also been reports of chemo-brain reactions to chemotherapy. My memory-loss problems started before chemo so it's hard to say what's the cause.

  • Copenhaver
    Copenhaver Member Posts: 2
    edited February 2008
    I think TriGeek is right, I've had "chemobrain" for years and I don't even start treatment for two more weeks. Laughing
  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Chemo-Brain is also now being referred to as cancer-treatment related cognitive decline.



    This wording allows incorporation of both treatment neurotransmittor/nerve cell effects in the brain itself, estrogen deprivation effects on the brain, and individual receptiveness to the effect of cognitive change after chemotherapy and/or hormonal therapy.



    As a trial of one, and fully biased, I have had cognitive effects from early on in treatment: chemotherapy x 6 months, then Tamoxifen x 1 year, now Arimidex almost 5 years. I went from menses, to irregular menses, to no menses, the later occurring during my 6 months of chemotherapy, aka chemopause. True menopause then occurred by definition within 12 months of no menses, and of course I was on Tamoxifen during this time, an anti-estrogen.



    I struggle with word dropping, name recognition failure, immediate memory compromise, slower task and sentence completion, focus problems, and with multiple tasking. For me too, my mathematical functioning dropped significantly, such that check book balancing, correct writing of checks, recall and recording of withdrawals, and timely bill paying is effected. Hence, our credit rating.



    This cognitive change has translated into: inability to recall immediately after I take my Arimidex whether I took it (my immediate mental black hole, as I call it), misunderstanding of directions for taking medications to help with neuropathy leading to over doing them, overlooking headache, weight gain, chest pressure as a sign of high blood pressure until a physician noted hypertension and asked, a second degree hand burn due to pouring boiling water not once but twice on the same hand spot due to not recognizing I needed to change the cup position itself, oversight of a son's infected leg, thinking it was just a little red until being admonished by the ER doctor, treating a swim season daughter with a yeast cream not made for external use, hearing her complaints that it burned, but not getting the connection between the cream and the burn and the interior only writing until admonished by a gynecologist, driving a car with a car top into a garage a moment after checking its presence, and serious banking problems in the absence of such before.



    I think these drugs, both chemotherapy and hormonals do effect the brain. The math and language struggles, the immediate memory loss, the reasoning problems are too many, and I'm too young to be attributed, imo, to something else. I think it must be some toxic chemotherapy induced brain damage (? free radical exposure, oxidative stress) superimposed on rapid and complete estrogen withdraw. It mimics signs and symptoms of dementia, and it is very worrisome.



    I came across this today, a sentence by a medical oncologist on the loss of estrogen posed by an oophorectomy done for the premenopausal breast cancer ER+ state: "....a paper recently published in Neurology suggests there may be a risk of dementia and Parkinsonism in the long-term follow-up of

    patients who have undergone premature oophorectomy (Rocca 2007a, 2007b)".



    "Increased risk of cognitive impairment or dementia in women who underwent oophorectomy before menopause.



    Rocca WA, Bower JH, Maraganore DM, Ahlskog JE, Grossardt BR, de Andrade M, Melton LJ 3rd.

    Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, Rochester, MN 55905, USA. rocca@mayo.edu



    OBJECTIVE: There is increasing laboratory evidence for a neuroprotective effect of estrogen; however, the clinical and epidemiologic evidence remains limited and conflicting. We studied the association of oophorectomy performed before the onset of menopause with the risk of subsequent cognitive impairment or dementia. METHODS: We included all women who underwent unilateral or bilateral oophorectomy before the onset of menopause for a non-cancer indication while residing in Olmsted County, MN, from 1950 through 1987. Each member of the oophorectomy cohort was matched by age to a referent woman from the same population who had not undergone oophorectomy. In total, we studied 813 women with unilateral oophorectomy, 676 women with bilateral oophorectomy, and 1,472 referent women. Women were followed through death or end of study using either direct or proxy interviews. RESULTS: Women who underwent either unilateral or bilateral oophorectomy before the onset of menopause had an increased risk of cognitive impairment or dementia compared to referent women (hazard ratio [HR] = 1.46; 95% CI 1.13 to 1.90; adjusted for education, type of interview, and history of depression). The risk increased with younger age at oophorectomy (test for linear trend; adjusted p < 0.0001). These associations were similar regardless of the indication for the oophorectomy, and for women who underwent unilateral or bilateral oophorectomy considered separately. CONCLUSIONS: Both unilateral and bilateral oophorectomy preceding the onset of menopause are associated with an increased risk of cognitive impairment or dementia. The effect is age-dependent and suggests a critical age window for neuroprotection."



    The oncologist hormone expert made reference to this in light of the large number of ER/PR+ breast cancer patients on hormonals, particularly the aromatase inhibitors which drop one's estrogen some 99% or so. Now the question has been raised, are these estrogen deficiency brain effects that have been widely voiced by some women reversible?



    Just thought I would pass this on. No offense taken. The scientist in me is flustered, as it's a horrible feeling to be looses ones brain power when mid age.



    All the best everyone, as we continue along this breast cancer journey.

    Tender



  • otter
    otter Member Posts: 6,099
    edited February 2008

    Lori, Tender, et al.--

    I had heard about chemobrain a long time ago, when an office employee in my department developed BC and needed chemo. She was amazingly strong, and kept working throughout the whole ordeal. Everyone noticed the little slip-ups and lapses, mostly because her work had been flawless before that.

    Four weeks ago when I first went to my breast clinic for workup of my lump, I saw posters in the elevator inviting participation in two different clinical studies on "chemobrain/chemofog" (whatever).

    Today, I met with my medical oncologist to learn about the next steps in my tx. I won't know whether I'll be getting chemo (A/C) until after my Oncotype test is back, but for sure I'll get arimidex.

    My medical onco had someone with him today who was working on those studies of cognitive effects of chemo.  He said the "chemobrain" issue had only come up recently, now that so many women are surviving BC and living longer.

    I was urged to participate in the chemobrain studies, if I end up on chemo. They're pretty simple, and totally painless, so I said "sure".

    I can't believe it's taken so long for the medical community to notice this problem and become concerned about it (or at least study it).

    otter 

  • BarbaraS
    BarbaraS Member Posts: 67
    edited February 2008

    What a funny conversation to find right now - I just finished cleaning up the coffe that spilled because I forgot to put the cup in the machine - so my one cup of coffee ended up on the counter.  Don't know if this is related to the chemo or the pre-existing lack of brain cells

    I joked at work that I couldn't afford to get "chemo-brain" since my mind was so marginal to begin with.

    But a question, how long into treatment did this start to become a problem?

    Barbara 

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Barb,



    If I recall my details about right, maybe by two or three treatments (twenty-one day spacing) in out of nine.



    Curiously, the anti-estrogen put the icing on the cake for me, which were started a month or so after completion of chemotherapy.



    Additional decline occurred when the aromatase inhibitor was added to the mix. That is particularly when mathematical function, which I always prided myself on, became compromised. Never did I realize that balancing a check book would become a frustrating, avoidance-desired event.



    I don't doubt that we all have good days and bad cognitively in life, and as we age, our cognitive function declines.



    But it scares me that these chemo and hormonal effects may be dismissed as just idiopathic to the person. Trying to be objective, even though it's me, I can attest these drugs mess with the brain's proper function.



    Tender



    PS I always spell and grammar check nowadays.

  • badboob67
    badboob67 Member Posts: 2,780
    edited February 2008

    I have never done chemo but was slammed into chemical menopause with Zoladex and Arimidex. I used to be a very good communicator and used words very effectively. Now, I feel as though my vocabulary has declined greatly; I just can't remember the words. It is extremely frustrating for me. I also have problems typing--I will think one word and type a completely different word.

    One other aspect of this type of memory problem that is so much different for me than being distracted or stressed is the complete lack of recollection of some events rather than not being able to remember specifics. I have called my husband several times within an hour to ask the same question--each time I called, I had no recollection whatsoever that I had already called. I honestly don't think this is a problem of stress/focus/borderline obsession. I went through a devastating marital separation the year before my dx and truly DID obsess and experienced tremendous amounts of stress. Still, even with the mental and emotional chaos I was experiencing at that time I did not have these problems.

    I have also found a blurring of the line between thought and reality--which is probably not the best way to describe it. It's like having a dream and waking up with the feeling that the dream was real. The best example I can give is THINKING I had paid the phone bill--even having the recollection of going through the motions of doing so--and finding out I didn't do it. It's like I have a better memory for things that DIDN'T happen than for those that did. Things like that make you question your reality. I am also paranoid enough to worry that I have forgotten some very critical information as it relates to my physical condition.

    My husband and kids have had to adjust to a new person who is not "old reliable". I can no longer be counted on to remember things like school events, dental appointments, birthday parties, etc. For a time, my kids exploited my memory problems to their advantage. I couldn't really follow through with punishments like grounding/restriction because I'd forget they weren't allowed to do something!

    I did have a moderate improvement when I began sleeping better at night. Perhaps what we are experiencing has more to do with sleep deprivation or missing out on different stages of sleep (REM, etc) than by the drugs themselves. It seems that sleep issues tend to be a problem for a lot of people dealing with cancer. Sleep also eludes people who are experiencing higher levels of stress and anxiety, so that fits too.

    This is a very interesting and relevant subject for me. I do try to exercise my brain; my dh and kids bought me a nintendo ds game several months ago along with some word games to go with it. It is just so disconcerting to have huge chunks of memory completely disappear! 

  • BarbaraS
    BarbaraS Member Posts: 67
    edited February 2008

    The sleep thing has been disturbing to me.  THe Dr & Nurse are blaming it more on the stress than medications.  As hard as I try, can't seem to stay awake past 8 p.m. am up 2-3 times during the night, and up for the duration at 4 a.m.

    I've been doing crosswords to (hopefully) keep things in check, but not too sure how that will work - having trouble with the coffee pot yet again this morning.  Yesterday at chemo, we brought a trivial pursuit game, and laughed quite a bit because there were answers that I knew were buried in my brain, I could talk all around the actual answer, but be exact with it - not a chance

    BArbara 

  • otter
    otter Member Posts: 6,099
    edited February 2008

    Part of the problem with getting a handle on this "chemobrain" issue is that so many things are happening at the same time--the stress of having BC, sleep deprivation, drugs to combat pain or nausea or both, effects of chemo itself...

    There may be an age-related effect, too.  Some researchers think menopause (loss of estrogen) is linked to gradual cognitive decline.  I don't know how reliable those studies are, but women who have been forced into chemo-pause might be affected that way; and from what I've read here, aromatase inhibitors seem to do the same thing.

    Surgery (probably general anesthesia) has a mind-numbing effect on me.  It's been almost 2 wks since my mast. + SNB, and the surgery only lasted a little over an hour, but I still feel foggy.  I'm not as alert as usual, I have trouble concentrating, and I have to work harder to find words.  Also, I've found myself getting really impatient and aggravated if I can't figure something out, especially if it is technically complex like a glitch with my computer software.  I want to give up, instead of solving the problem.

    When all these things come at the same time, it must be hard to sort them all out.  There seems to be little doubt, though, that the big-gun chemo drugs are doing something to the brain.  Your descriptions remind me of the symptoms of early Alzheimer's.  The big question is, is chemobrain temporary, or permanent???

    otter 

  • Curlylocks
    Curlylocks Member Posts: 1,060
    edited February 2008

    Otter,

    I have heard that chemo brain can last up to 10 years post treatment!!!

    <>I have to agree that there is probably a combination of everything here, at least for me it is being thrown into chemical menopause, lack of sleep, stress due to bc and being on Armidex.

    <>Michele 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2008

    I think age definitely has a bearing on chemobrain. I do prefer to blame my memory loss on chemo rather than my age, though, I think it's a mixture of many things. I find that I can remember stories about my second grade teacher but have no idea what I had for dinner yesterday. It does seem to be short term memory loss that plagues me more than my long term.

  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 213
    edited May 2016


    This topic deserves a bump. 

     

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