Cognitive issues... Chemo-brain and tamoxifen

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jenlee
jenlee Member Posts: 504
edited June 2014 in Managing Side Effects of Breast Cancer and Its Treatment

I'm getting to the point that I'm incredibly frustrated and even quite frightened by some of the cognitive dysfunction that I'm experiencing, probably both from chemo and from Tamoxifen. Sometimes I forget things that just happened until reminded, i forget conversations, I forget to do things, I have problems with word recall (restaurants, people's names, etc.), and I'm constantly losing things.

Fortunately, I did learn some strategies some years ago after a mild traumatic brain injury... Keeping lists, checklists, taking my time (i.e., get things ready at night and leave extra time in the morning to avoid the morning rush), and don't juggle too many balls.



But the fact remains that I'm often embarrassed by some of these incidents. I don't really want my close friends to know because I'm afraid that they won't feel comfortable letting their kids come for playdates, which would devastate my daughter. Thank goodness my daughter is eight and very intelligent; I think that subconsciously she knows that she needs to be a little more responsible and "help" me. And fortunately, at this age, I can't do something really awful like leave her in a hot car. When I'm out in public, I'm almost afraid to get into conversations... i.e., fear of exposing this weakness. I need to do some more research on how long chemo brain can last. I did read that AI's don't have the same effects as Tamoxifen, so I look forward to switching in a few years.



Is anyone else having these scary problems and if so, any tips on coping. My mind keeps rushing ahead to early Alzheimers and I feel so sorry for my family!

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  • yogafan
    yogafan Member Posts: 17
    edited September 2012

    Hi there. A lot of this sounds like it could be stress. I have not started treatment yet (next week) but since my diagnosis have been more forgetful, absent-minded, etc. - and I think it's all the stress of dealing with everything. Multiple doctor's appointments, surgeries...it's all a lot to process. Have you tried meditation or yoga? Both have helped me in the past when I'm feeling super-stressed. Also, the anxiety and embarrassment you are feeling when dealing with these issues is probably causing more stress! Try to take some time each day to focus just on yourself, your breathing, your quiet mind. And definitely talk to your doctor about this; they may have more strategies for you, and if you are truly concerned about physiological changes, they need to know. Best of luck to you!!

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  • mw900
    mw900 Member Posts: 76
    edited September 2012

    Jenlee,

    It sounds like you think your problems are more serious than "chemo-brain" or "senior-moment" type of incidents. Have you spoken with your physicians about this? Could the chemicals you've been taking have affected any of the damage from your traumatic brain injury? Just speaking for myself, I had 13 cycles (39 treatments) of Taxol and have been on Tamox for 2-1/2 years and while I have had some forgetful moments it is certainly nothing that seems frightening to me. I'm so sorry you're having to deal with this on top of everything else. Best of luck.

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    Jenlee, me, too. I know wxactly what you mean. I just vaguely remember things, even important or recent ones. I hope this wears off soon.

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited September 2012

    A couple of things:  it took me TWO years to get myself back after 4 TC and radiation.  Not one, as they all said.  My hair, WBC count, my thyroid, and yes, my brain.  I am back to who I was in almost all ways (save my periods and eyelashes/brows, darn it!!!)

    I would give yourself time.  I also did a huge amount of brain work through my treatment to keep things firing.  I am a professional writer, and it's kind of amazing:  the articles I wrote during treatment STINK.  I now write just as I did before.  

    Keep active, don't get frustrated, give yourself time!

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  • jenlee
    jenlee Member Posts: 504
    edited September 2012

    LtotheK, if it took you two years after 4 x TC, hoping it won't take me four years after

    8 xTAC! Oh well, maybe i'll forget that I had cancer.

    I'm having trouble sleeping and fatigue might be leading to some of these issues. I hate to take more meds, but may ask for something for sleep.



    Interested to hear from others who've have had difficulty with chemo brain, etc. And how you might have managed it!

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  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited September 2012

    I'm just glad to see this thread.



    It's hard to piece together an event or conversation that is the subject of discussion while at the same time having a discussion about that very same event or conversation.



    I had a conversation with my daughter last winter which left me in tears because she was so relentless -- "don't you remember you we're sitting in that chair and it was the day I finished exams and we talked about this?" She wasn't being mean -- she honestly couldn't understand why I didn't remember and thought if she kept supplying details, I would.



    I've learned that if I will relax when I can't find the word, it will come to me, but if I try to hunt it down, it scurries away.



    I INTENSELY dislike looking for things so I developed routines years ago such that at least I don't have to deal with that.

    This is very frightening stuff and I don't think there are easy answers. I've never mentioned it to my oncologist because what is she going to do? At best, she will validate me, at worst she will dismiss me, but there isn't a treatment.



    Mostly, I'm glad to know I'm not the only one.

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  • bcbarbie10
    bcbarbie10 Member Posts: 319
    edited September 2012

    I lost my husband's atm card. I didnt even recall him giving it to me at all! He was furious bec the default PIN was with it. I racked my brains and our room, our closets, my purse, nothing. Then i gave up, sat down and folded the laundry. Yesterday, it fell out of my purse. The one i use every day.

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  • SillyMama
    SillyMama Member Posts: 173
    edited September 2012

    Oh, HECK YES I had cognitive dysfunction while on Tamoxifen. Especially at the beginning. My husband was annoyed; of course since I'd already had surgery he wanted me to be back to normal. I finally found an article that mentioned Tamoxifen and cognitive impairment, so he settled down.

    It got better over time. And of course, worry, stress, and fatigue cause cognitive dissonance even without Tamoxifen. Give yourself extra time for tasks and remembering... and be gentle with yourself.

     (((hugs)))

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  • AZS
    AZS Member Posts: 1
    edited October 2012

    Hi

    Yes...chemo brain is real. I am a breast cancer survivor...almost 3 years out now. I had chemo (taxotere, carboplatin and ???) perfect example...I can't recall the last drug. I will after I send this! (Ha!)  Anyways, I knew it was a real issue when I returned to work as a teacher, and couldn't remember the words to the Pledge of Allegiance. I used to say it every morning. My memory has gotten better but is no where near what it was prior to treatment. Word recall is the worst. I am hoping that each year it gets better. I also take tamoxifen and a few pain meds to manage nerve damage from the chemo....( I was one of the lucky ones who had a reaction to the Taxotere and now suffer chronic back pain...)

    Everyone is different. Stress can definately play into things so look for small ways to make things easier...I uses Post-its everywhere!

    Take care!!!!

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  • thefuzzylemon
    thefuzzylemon Member Posts: 2,630
    edited October 2012

    Oh yes yes yes....I realized I had a significant problem when I could tell by the expressions on the faces of my girls that I was seriously screwing up something in conversation...I repeat myself a lot, but don't know it. That's just one of many available problems!

    I'm not sure if this helps...but, I've had to forgive myself. I do the usual - post its, alarms, reminders and a double-check reminder, etc...but when I forget something, it just has to be ok...there's nothing more I can do.

    I also Have insomnia and I know that affects this problem a lot. Are you under high stress?

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  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited October 2012

    "In conclusion, adjuvant chemotherapy in women with breast cancer can be associated with deteriorations in memory and this may persist over time. The addition of tamoxifen may lead to more widespread memory deficits."

    http://www.ncbi.nlm.nih.gov/pubmed/16097037

    It is a sign of my cognitive impairment that it didn't occur to me to look for articles until I read SillyMama's post.  

    I have forgotten the PIN for my debit card that I have had for years.  Stood in front of the ATM for ages trying to remember.  It took me four tries to put gas into a car I have been driving for four years -- went on the wrong side, then goofed the credit card up then didn't remember I have to pop the gas tank cover in the car then had no idea what kind of gas I was supposed to get.  Then I drove off without getting the car wash I paid for.

    Got to find a way to laugh, but this is a little scary. 

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  • jenlee
    jenlee Member Posts: 504
    edited October 2012

    Being really busy or really tired makes it so much worse. I have been experiencing insomnia lately. A few days ago after I dropped my daughter off at school, I got back in the car, drove out of the parking lot, and asked her a question (momentarily forgetting that she wasn't in the car because I had JUST dropped her off moments ago)!

    Taking things slowly and not over scheduling is definitely a big help. The more I have on my plate, the more opportunities to screw up.



    Word recall is definitely a challenge -- names, places, restaurants, names of movies, books I've read. This also makes it easy for me to be the scapegoat for missing items. My husband alleges that I misplaced the Disneyland annual passes. Last Saturday, I left my iPad at my daughter's dance school. Thank goodness it was still there when I finally realized it on Monday.



    LadyGrey, thank you for posting the article!

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  • lindainfla
    lindainfla Member Posts: 15
    edited February 2014

    There is a study that has been done at the University of Rochester by a Dr. Mark Noble that confirms the link between Tomoxifen and brain fog in some women. (google it)   I have it so bad I have a hard time functioning some times.  My onc tends to brush these type of side effects off.  And now they want BC patients to stay on the drug for 10 years! My primary care doctor, who I finally went to see in regard to the fog/memory loss issue, told me that several of  her Tomoxifen patients have reported similar side effects.

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  • nnrbf101
    nnrbf101 Member Posts: 15
    edited February 2014

    I was dx in 2005, had chemo, was started on Tamoxifen at that time, then had recurrence in 2012 and had chemo again.  I was through with the Tamoxifen by then, but started dealing with major cognitive issues again this time around.  It's very frustrating!!! I don't know whether it's the Stress, Chemo, Tamoxifen, or something else, but I do know it's real.  I am in the engineering field and have had to change positions because I'm just not able to focus and concentrate to accomplish what I used to.  I worked very hard to get where I was in my career and feel now as if I'll have to throw that all away.  My oncologist prescribed Provigil, which does seem to help with the focus some. My PCP just recently changed me from that to Ritalin to see if it works as well, but so far I would have to say no. 

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