chemo brain

spok5
spok5 Member Posts: 18
edited March 2014 in Colorectal Cancer #1
Help- I think I'm going crazy! Just a preview- I am a 43 yr. old mother of 3 boys. I was DX stage 3 in Oct. 2005 and after a resection started treatments of oxaliplatin and xeloda. I finished my treatments in May 2006 and spent last summmer healing. I had noticed a bit of chemo brain (recently my sister told me that when I came to visit her in the summer I had it big time- but of course I don't remember).I thought I was getting over it, but now I think it is worse. I definitely can tell that I don't remember things. My kids think I'm crazy and love to tease me about it. Has this happened to anyone else? Chemo brain that doesn't go away, or comes back or gets worse? How long did it take you to get your short term memory back? Am I doomed? Is 43 too early for alzheimers- because I notice that I am less patient also?

Comments

  • hopefulone
    hopefulone Member Posts: 1,043 Member
    #2
    Hi. Your not going crazy. Do a web search on it. It's a valid claim. Below is from a copy past from the ACS site relating to "chemo-brain" .

    For a given individual, chances are that their cognitive function will recover to normal or near-normal levels a year or two after chemo."

    Good luck and God Bless.

    God Bless
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    #3
    Hi -

    You aren't crazy. I experienced very mild short term memory loss and concentration issues (although when it was something I really cared about, I could concentrate fine.) All my life I have loved to read, but I found myself reading fewer books because it was more difficult to concentrate. At work, I found that if I thought of something that needed doing at the end of the day, I needed to leave myself a "sticky note" to make sure I still remembered it in the AM - that was NEVER the case before chemo.

    Please don't laugh - I started doing those SODUKO puzzles in the paper (this is really almost embarrassing), but now I can almost always do the "hard" ones and I find that my concentration is hugely improved - I am reading again constantly (like I always used to). I still forget irrelevant things my husband mentions, but he says I always did that! (LOL)

    So maybe this is all some psychological thing or maybe some small "brain training" tasks do help. It might be worth a try.

    Take care,
    Betsy

    P.S. I read an article about chemo-brain - unfortunately can't find it now, but it did indicate that it finally goes away.
  • Shoda
    Shoda Member Posts: 12
    #4
    You aren't going crazy. Chemo brain is a real issue. I was DX April 05. Six months of 5FU & Leucovorin. While on this cocktail, I was really forgetful. Although 18 mos out of chemo, things have improved somewhat, but I am not back to the same level I was before. I write myself notes when I can, and carry a very small tape recorder for those times I am not close to a pen and sticky note. I am still hoping to return to pre-chemo memory levels. Good luck. Shoda
  • spongebob
    spongebob Member Posts: 2,565 Member
    #5
    Spok -

    Just being the mother of three boys is enough to make any dain bramage understandable. I'm 5 years out and still forgetful... of course there are those who would say I always was... and then there are those who would say that I'm really a blond... and then there are those who would say I.. uh... what were we talking about?

    I wonder if smoking pot once you have chemo brain would actually IMPROVE one's short-term memory... Hmmm... if NIH were to fund a study, I wonder how many volunteers we could find here...

    Well, off to get some munchies... TACO BELL-HO!
  • scouty
    scouty Member Posts: 1,965 Member
    #6
    I am sorry you are going thru this, but it is VERY real and as cancer patients we are expected to accept it and be glad to be alive. It's a double edge sword for sure. I am 2 1/2 years out of 8 months of chemo; Folfox w/ Avastin (yes oxaliplatin was part of it) and have come to accept that my neuropathy and chemo brain will always be with me. I am just happy that I am alive and stopped doing chemo months before my oncologist wanted me to. Luckily I am NED currently and work hard to make sure it stays that way. I also understand that could change with my next testing just like everyone else on this board.

    That all being said I really am happy to finally see some studies being done on chemo brain. The last one I read showed cells being killed in the brain in the short term memory area as well as the area affecting focus and concentration. I suspect the longer you are on chemo, especially multiple ones, the more pronounced the impacts. The studies that say it goes away after a year or so were done on 5-FU and the older drugs. There are no definitive studies published on some of the more recent drugs we get. YET I hope.

    Understandable they seem to concentrate their studies more about extending life then caring about the long term side effects. I hope that changes one day soon. It should involve both, or at least warn us about the long term effects.

    While Xeloda is the pill form of 5-FU, it's side effects are very different and will not be known for a while.

    I don't mean to rain on your parade but we are alive and this is just something we all apparently have to live with. AND it is NOT Alzheimers, thank God.

    Lisa P.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #7
    scouty said:

    I am sorry you are going thru this, but it is VERY real and as cancer patients we are expected to accept it and be glad to be alive. It's a double edge sword for sure. I am 2 1/2 years out of 8 months of chemo; Folfox w/ Avastin (yes oxaliplatin was part of it) and have come to accept that my neuropathy and chemo brain will always be with me. I am just happy that I am alive and stopped doing chemo months before my oncologist wanted me to. Luckily I am NED currently and work hard to make sure it stays that way. I also understand that could change with my next testing just like everyone else on this board.

    That all being said I really am happy to finally see some studies being done on chemo brain. The last one I read showed cells being killed in the brain in the short term memory area as well as the area affecting focus and concentration. I suspect the longer you are on chemo, especially multiple ones, the more pronounced the impacts. The studies that say it goes away after a year or so were done on 5-FU and the older drugs. There are no definitive studies published on some of the more recent drugs we get. YET I hope.

    Understandable they seem to concentrate their studies more about extending life then caring about the long term side effects. I hope that changes one day soon. It should involve both, or at least warn us about the long term effects.

    While Xeloda is the pill form of 5-FU, it's side effects are very different and will not be known for a while.

    I don't mean to rain on your parade but we are alive and this is just something we all apparently have to live with. AND it is NOT Alzheimers, thank God.

    Lisa P.

    Scouty -

    (sorry, Spok, I'm gonna hijack your post for a minute here)

    You make an excellent point about the whole notion that "they seem to concentrate their studies more about extending life then caring about the long term side effects. I hope that changes one day soon. It should involve both, or at least warn us about the long term effects." Right-on, gurlfrend!

    In a different post, I mentioned to Limey that I spoke at a conference back in October. It was the third Biennial Conference on Survivorship sponsored by, among others, NIH/NCI, ACS, and LAF. the whole paradigm is shifting as we speak. The medical profession is beginning to realize that they are actually saving many of us and now they need to deal with the long-term residual effects of the treatment regimes they use to keep us a live. They are shifting from a "prolong life" mode to a mode that also looks at quality of that prolonged life. this is particularly true in the case of childhood cancers. I saw some amazing informatics programs that track patients, their treatment regimes and their long-term issues. You're right on the money. Check out the NCI website and the acorn (I think that's right - Greta, check me?) website for some cool studies.

    Cheers, darlin'!

    - Bob
  • jams67
    jams67 Member Posts: 925 Member
    #8
    scouty said:

    I am sorry you are going thru this, but it is VERY real and as cancer patients we are expected to accept it and be glad to be alive. It's a double edge sword for sure. I am 2 1/2 years out of 8 months of chemo; Folfox w/ Avastin (yes oxaliplatin was part of it) and have come to accept that my neuropathy and chemo brain will always be with me. I am just happy that I am alive and stopped doing chemo months before my oncologist wanted me to. Luckily I am NED currently and work hard to make sure it stays that way. I also understand that could change with my next testing just like everyone else on this board.

    That all being said I really am happy to finally see some studies being done on chemo brain. The last one I read showed cells being killed in the brain in the short term memory area as well as the area affecting focus and concentration. I suspect the longer you are on chemo, especially multiple ones, the more pronounced the impacts. The studies that say it goes away after a year or so were done on 5-FU and the older drugs. There are no definitive studies published on some of the more recent drugs we get. YET I hope.

    Understandable they seem to concentrate their studies more about extending life then caring about the long term side effects. I hope that changes one day soon. It should involve both, or at least warn us about the long term effects.

    While Xeloda is the pill form of 5-FU, it's side effects are very different and will not be known for a while.

    I don't mean to rain on your parade but we are alive and this is just something we all apparently have to live with. AND it is NOT Alzheimers, thank God.

    Lisa P.

    Lisa,
    I like your realistic view here. I think we are pretty much guinea pigs at this point in history. Hope my children's generation will not have to cope with chemo brain. There have been improvements lately and I'm just glad I was around for them.
    Jo Ann
  • jams67
    jams67 Member Posts: 925 Member
    #9
    Try the search box on this site. Chemo brain was discussed not too long ago. Hope this helps.
    Jo Ann
  • va1956
    va1956 Member Posts: 6
    #10
    jams67 said:

    Try the search box on this site. Chemo brain was discussed not too long ago. Hope this helps.
    Jo Ann

    I finished my chemo in June of 2006. Well actually on my 11th chemo infusion (supposed to have 12) I had a severe allergic reaction to oxiliplatin and went into anaphylactic shock. They of course stopped all chemo with my blessing. I am now suffering from numbness in my hands and feet as well as pretty bad short term memory loss. My feet and toes stay cold and I cant move my toes on my feet. They have tried gabopentin, lyrica and a TENS units on me but nothing has helped me regain my sensitivity in my hands or feet. I just recently had an MRI on my brain and also an EEG test as well. Everything thankfully came back normal. I am told that with time my chemo brain should get better however I feel after almost a year now that it probably wont. I try to remain optimistic about it all and I know things could be lots worse and am thankful that I am still alive even when I still have bad days. I feel that I am quite fortunate and thank God often for my family and my lovely fiance that looks out for me each and every day. Take care and try to be optimistic cause a good attitude and outlook really does help!!!

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