WORRIED about memory loss ,how long does it last? Brain mets?

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WORRIED about memory loss ,how long does it last? Brain mets?

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  • raffomimi
    raffomimi Member Posts: 96
    edited May 2012

    I have been having really bad memory loss(finished chemo nearly 6mths ago), so bad even my husband and sister& kids have noticed(I noticed as well!!!) For example I was in overnight in hospital nearly 3 weeks ago and was talking to my sister on Sunday and could not remember WHY I was in hospital and I was trying to remember why when after 15 minutes I had to ask my husband why I was in hospital and he said it was because of the 9cm ovarian cyst.I'm only 39yrs old. It happens when I'm talking as well, I can't remember names, objects etc and I repeat myself a lot and I don't notice that until my eldest(20yr old) tells me that I have already told her this..... I have had a pain in the front of my head now for a wk and a half. I did go to my doctor this morning and told her about the headaches(codeine and paracetamol doesn't make the pain go away) and memory loss and she rang my onocologist's office to move my appointment from 13th June to a closer time frame then sent me next door to the nurse for a mini mental exam.she also rang the OBGYN to move them along with the ovarian cyst I have(Waiting on a date for a full hysterectomy).......

    Anyone have memory loss like this???? Is it something to be concerned about??????

  • raffomimi
    raffomimi Member Posts: 96
    edited May 2012
  • jancie
    jancie Member Posts: 2,631
    edited May 2012

    I had horrible memory loss from the chemo.  My dh would tell me something and 5 minutes later I would be asking him what he said.  I couldn't remember any appointments, what I had scheduled, etc.  For the first time in my life (52) I started carrying around a calendar and to this day almost 3 years later I still need it.

    My memory started improving about 1.5 years from completion of chemo but it still isn't where it was prior to chemo.

    Add menopause to the mixture and you just lost your brain.

    I still stumble for words.  I had always been proud of my extensive vocabulary but I couldn't even carry on a normal conversation the first year.  Simple 4 letter words would escape me and I would just sit there almost stunned trying to find the word I wanted to use.  Luckily those people around me were patient and understood that I was having difficulties.

    Wondering if the Tamoxifen isn't giving you headaches.  My SE's from tamoxifen change on a regular basis.  For a couple of months I had extreme jaw pain but that has gone away now.  I still have bad pain in my lower extremeties.  Some days are worse than others - I will all of a sudden feel like I have shin splints.  The pain in my hips is constant.  I am on Percocet 10/325.  I had developed a tolerance to Lortabs so they switched my pain meds.

  • lago
    lago Member Posts: 17,186
    edited May 2012

    I haven't had the issue but I know many here on these boards have… you aren't crazy.

    I will admit I was taking Acetyl-L-Carnitine to prevent neuropathy during chemo. I swear my memory got better so I am still taking it. I too was tossed into chemo-pause. It does say on the package its a "memory booster"

  • GirlPowerDebbie
    GirlPowerDebbie Member Posts: 213
    edited May 2012

    5 months out from chemo and I have serious swiss cheese brain, like there are air pockets.  It takes me so long to come up with the right word.  It feels like I am reaching back into my head.  If I am with DH he sometimes gives me the word, but at work it is not cool. 

    No help here, but my sister who is a 33 year survivor has the worst chase of chemo brain I have ever come across.  She cannot remember things that happened over the course of her life - like parts of her slate were wiped clean.  I feel bad for her.  She lost a daughter to BC, and now another daughter has been diagnosed with ovarian cancer ... I wish I could wipe those horrible things from her memory and she could remember the really good times from when they were little, and healthy. 

    Cancer sucks.  Side effects suck.  But the alternative is worse I guess.

    Debbie

  • Tazzy
    Tazzy Member Posts: 2,546
    edited May 2012

    I am on chemo treatment 6 of 8 and definitely suffer from 'chemo brain'.   I have read (and we cant believe everything we read I know) that it can last up to 5 years... sometimes longer.  I asked my MO about it and she said that like our cancers everyone is different.   Some it lasts a few years, some only months.... ?!

    Raffomimi.... you also have so much else you are having to cope  with maybe its your brain's way of dealing with all you have to.   Brains are a bit like hard drives... can only store so much in them before crashing.

    Post-it notes have become my best friend.

  • itsjustme10
    itsjustme10 Member Posts: 796
    edited May 2012

    Just so you feel better about it, I'll share my most memorable chemo-brain incident. 

    I was at a bagel store picking up a couple of things, and they were wrapping it up, and I started panicking - I couldn't find the keys to the blue car that was driving that day.  I searched everywhere - I was so mean to them - like hurry up, I need to go and see where the keys are - if I dropped them outside and someone finds them they could steal the car or something.

     I walk outside, and there is my gray car sitting right where I parked it.  I had THOSE keys.  I completely forgot which car I drove there. 

     So, now I've totally embarrassed myself, but I hope you realize its not just you.

    Embarassed 

  • mom2twins34
    mom2twins34 Member Posts: 185
    edited May 2012

    Just wanted to chime in and say that I have also experienced this.  I had a stellar memory before all of this and now cannot remember anything.  Between the memory loss, loss of balance and the headaches, I became very concerned about brain mets.  After monitoring my symptoms for a while, my oncologist became equally concerned and ordered an MRI a few months ago.  It was clear and I think we were both surprised!  She has chalked it up to all of the chemo, the hormonal changes caused by the large ovarian masses I also had (I noticed you mentioned this, too), and the chemopause [which is now full-blown menopause because I recently had a complete hysterectomy as a result of the masses].  I think the Tamoxifen has also contributed.  In the end, I'm really glad I had the MRI because she and I needed that piece of mind.  Given how quickly and dramatically my symptoms increased, I don't think I would have believed it wasn't brain mets if I hadn't had the scan.  

    So I certainly understand your concern and I am glad to see that you are going to see your oncologist about it.  It is best to just get it checked out.  If you are really concerned, I think that's the only way to know for sure that nothing more sinister is going on. Hopefully it is all due to everything you've been through.  Oh, the joys of being a cancer patient! 

    Best wishes to you... 

  • jancie
    jancie Member Posts: 2,631
    edited May 2012

    Speaking of doing stupid things.....

    I bought a pair of snow skis at a garage sale.  6 months later I am asking my dh where did they come from?  I don't even remember to this day bringing them home.

    There is no telling what other stupid things I have done on chemo brain.

    One of the worst was "hiding" a $7K diamond watch.  I found it 6 months later in a tampon plastic holder thingy in my desk drawer.  I supposed I was thinking nobody in their right mind would look there for the watch.

  • DianaNM
    DianaNM Member Posts: 281
    edited May 2012

    I've been through this for years, way before my BC diagnosis. I had chemical sensitivities from exposure to pesticides at work, then menopause, then who knows what. It would get better then come back. Two things have helped (though it is worse now since my DX). A smart nurse said let's try testing your oxygen before we send you to neuro, turns out I wasn't getting enough oxygen at night. So now I use a condenser. And I started adding coconut oil to my diet. I felt like I had my brain back for a while there.

    I don't know if either of these things would help chemobrain, but it's worth a try? 

  • crystalphm
    crystalphm Member Posts: 1,138
    edited May 2012

    I have not had chemo, just 2 mastectomies 1 year apart, but I have quite a memory issue now. My doctor feels it is the severe emotional response I had to it all, as well as the instant menopause (ovaries removed)...sometimes I worry myself.

    I use to pride myself on my memory. I am going to look into the supplement mentioned above.

  • camillegal
    camillegal Member Posts: 16,882
    edited May 2012

    Oh this is more common than ever and u don't have to even have chemo to have it---the studies are being done now and now they are saying there is no time limit to how long it will last.

    My sis ter and I will talk on the phone at least 1/2 hr all the time now it's at least an hr---cuz we keep on saying wait I forgot what I was goin to say and we wait and nothing. She too has been dealing with cancer. So it's no fun and it is frustrating,but after a while u just go with it.

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