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31 Replies Latest reply: Jul 4, 2012 6:01 PM by KyGuy RSS

Memory problems after transplant ?

Dustin81 Registered Users
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Does anyone have long or short term memory problems? I had a double cord with radiation that failed then a month later a haplo transplant from my father with chemo and radiation again. I'm only 30 my memory was ok before all this.

 

Has this happened to anyone? Does it go away ?

  • Re: Memory problems after transplant ?
    lymphomajourney Registered Users
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    I have had both auto and allo transplants. After both, and more likely due to the related chemo and radiation treatments, my short-term memory is weaker than before ('chemo brain' as is commonly used). I had a cognition test recently and the tester noted that while formal testing may not show much change, people in high performing jobs tend to observe a drop (the more elaborate 'working memory' tests were hardest for me).

    I do not know yet whether this is the 'new normal' or whether it will get better over time (balanced against the normal aging process in my case as I am in my 50s). In the meantime, I have become even more of a to do list person.

    Best of luck,

    Andrew

    My Lymphoma Journey

  • Re: Memory problems after transplant ?
    Tex Registered Users
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    Welcome to the crappy world of chemo brain.  Yes, a lot of us have this issue following treatment for cancer.  It was first noticed by women fighting breast cancer.  Not sure why it started there but it did.

     

    It is a phenomenon that is really just now being studied seriously.  Actually, when I went through my SCT back in '04 my onc didn't have any information on it and didn't have a lot of literature to explore.  In the past few years they've really started looking into it but, the last I've read or heard, they really don't understand the physiology that makes it happen.  On the positive side, they aren't thinking it's just a figment of our imagination anymore.

     

    Most folks that have it do have short-term memory issues.  I've also been through phases where I couldn't think of the right word to save my soul.  I've walked into a lot of rooms only to ask myself why I was there.  Basically, it's stuff we've always had to deal with but it's like stuff we've always had to deal with on steroids.

     

    The good news is that it can improve and should, at least for the first year past-chemo.  After that, I don't know what the research is but I have days where I'm feeling (thinking) better and days where I wonder if I'll ever get my brain back together.

     

    Now, here's a benefit.  I had my chemo at the cusp of age 50. That's a point in life where we all have some decrease in cognitive function.  While all my friends aren't remembering so good because they're over 50, my memory issues is because I had chemo.  I get to laugh at those old codgers a little bit.

     

    Hope this helps.

     

    Blessings

  • Re: Memory problems after transplant ?
    KyGuy Registered Users
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    How long ago was the transplant?  The memory issues typically get better over time.  I had a lot of issues for the first few months after my transplant. 

     

    Take care,

    Kelly

    • Re: Memory problems after transplant ?
      sarabrooks83 Registered Users
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      I haven't had a transplant myself, but I've done my fair share of reading on the subject -- articles, blogs, posts here -- and memory loss is generally considered a very valid side effect of chemo. This article from the NHS says that the side effects of one drug in particular, 5-FU, can linger for years after treatment: http://www.nhs.uk/news/2008/04April/Pages/Chemotherapyseffectsonthebrain.aspx. so don't feel like you're alone or that these symptoms aren't valid!

    • Re: Memory problems after transplant ?
      Dustin81 Registered Users
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      70 days ago
      • Re: Memory problems after transplant ?
        Tex Registered Users
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        Hell, Dustin.  I doubt you've even seen the worst of it, yet.  Give it time.

      • Re: Memory problems after transplant ?
        mocon Registered Users
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        Dustin --

         

        To add to KYGuy and Tex, I'll chime in.  I had some short-term memory problems after my MUD transplant last October.  At one point, I considered carrying a notepad, so that I wouldn't get halfway where I was going and forget why I got up in the first place (which actually happened a few times).   By the time I got to Day +100, that was pretty much a thing of the past; I'm 41 and had never had any memory problems before, so chances are it will clear up for you as well.  

         

        Right now, I am facing a possible haplo-transplant from my brother for since my first transplant seems not to have stuck.  Hope you are doing well, and things improve for you!

        • Re: Memory problems after transplant ?
          Dustin81 Registered Users
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          I'm sorry to hear about your transplant not working out. How long did your first one last? I have never heard of a MUD transplant. I know very few hospitals do haplo transplants, I had mine done in Boston at Dana Farber. First I had a double cord blood transplant but it did not work so they did a haplo from my father. I was in the hospital for 75 days. I'm at day 73 after my haplo. My platelets are going down, I left the hospital with almost 200k and now they are just over 100k. The doctor said not to worry that it is prolly from the steroids, pro graph and cell-cept. All of my other counts are really good.  I really hope everything works out for you Mocon I'm just worried I won't have a normal life again.
          • Re: Memory problems after transplant ?
            Tex Registered Users
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            We all have a "new" normal after all this cancer crap.  Some of us reach a basic physical life that's about the same but, even then, we're cancer survivors.  That changes us.

             

            Transplants and chemo can make real changes in our physical, mental, emotional and spiritual lives.  Some of the changes are for the better, I think. 

             

            I think the patient's age can help a lot in figuring how much will come back.  At 30, you've got a pretty good shot at getting back all the physical stuff (and that includes memory).

             

            Bottom line, some of us don't get to return to any kind of life.  The rest of us need to accept what we have and do what we can to improve.

             

            Blessings

          • Re: Memory problems after transplant ?
            mocon Registered Users
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            My first one was in October.  MUD refers to the type of donor -- I had a "matched, unrelated donor" for my transplant.  You only went a month between the cord transplant and the haplo?  Wow.  Glad to hear that you are doing well. 

             

            You will be surprised as to how quickly things turn around once you get past the first 100 days -- I relapsed at 6 months, but months 3-5 I had a lot of improvement in short term memory, fatigue, and just how I felt generally.  I really was pretty much back to "normal" when I ended up back in treatment.

             

            I hope for the best for you as well.   

            • Re: Memory problems after transplant ?
              Dustin81 Registered Users
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              How are you doing now ?

              • Re: Memory problems after transplant ?
                mocon Registered Users
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                If they didn't take my blood twice a week and tell me that I had very low counts, I wouldn't even know I was "sick."  My hemogobin is a little low, so I get a bit tired, and I have been requiring a platelet transfusion every 10 days or so, but otherwise, I seem to be fine.  The doctors want to proceed to the second tranplant, using my brother as a haplo donor, though, because my WBC has stayed at < 1.5 for weeks, my other counts haven't come up, and because my BMB showed 9-10% blasts.  But I seem to be stable, right now -- they gave me a DLI (an infusion of lymphocyte cells from my first donor) last week -- which they think will hold the disease in place -- but they don't anticipate it will reduce the blast %. . . .

                 

                How about you?  Feeling any better?

                • Re: Memory problems after transplant ?
                  CherylLynn Registered Users
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                  don't mean to hijack this thread - but wanted you to know that I am 18 months out of a Haplo done in Hamilton Ontario last January and doing very well - off all my meds - although I did have an IVIG infusion this week to boost my immunity - Haplos are being done in alot of centers now and you will find there are quite of few of us here who can answer any questions you have about them - my sister was my 1/2 matched donor

                   

                  Cheryl

                  • Re: Memory problems after transplant ?
                    lymphomajourney Registered Users
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                    Very good news! Andrew

                  • Re: Memory problems after transplant ?
                    mocon Registered Users
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                    CherylLynn --

                     

                    So glad to hear that you are doing well.  For the first time in a few months, I actually had some good news.  They did a "KIR typing" test on my brother, who is 7 or 8/10 -- I always forget which (hey! memory problems!) and found that he had a KIR "preferred" mismatch, which I understood to mean that among potential haplo donors, my brother's typing relative to mine would have a reduced rate of serious treatment complications and relapse.  So that's a plus.  It looks like I will be headed for haplo transplant some time in mid-July. 

                    • Re: Memory problems after transplant ?
                      CherylLynn Registered Users
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                      well you have a better match than me! - my sister was only a 5/10 match - I was never told about KIR typing

                      things have been relatively good compared to most people's experience - knock on wood - however my counts do run on the lowside of normal like I said before...best of luck - and keep posting if you can - would love to follow along and offer my support - if you wish to read more about my transplant you can @ www.caringbridge.org/vist/cherylthornton

                       

                      Cheryl

  • Memory problems after transplant ?
    Dustin81 Registered Users
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    What do you mean???
  • Re: Memory problems after transplant ?
    bmtinfonet Registered Users
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    Memory problems after transplant are a real and annoying side effect of treatment.  For most people, the problem resolves over time.  For others, it can persist and interview with things like job performance, etc.  BMT InfoNet has several good webcasts about "chemo brain" or memory problems after transplant.  You can view them online or download them to your MP3 Player.  To see the entire list go to bmtinfonet.org/webcast.

     

    BTW, BMT InfoNet's next survivorship symposium, which will feature talks on this problem, as well as many other challenges after transplant is scheduled for April 20-21, 2013 in southern California.  It's a great way to learn about these issues from both medical experts and other transplants survivors.  Stay tuned for details.

  • Memory problems after transplant ?
    Dustin81 Registered Users
    Currently Being Moderated
    Thanks guys for the info? I found this PDF that goes through the transplant process, if I saw this before my transplant I think I wouldn't have done it. I was very informed before hand I knew all the drugs knew all about my counts because of having bone marrow failure at 14. I just don't know how I can live the rest of my life like this and I don't even have the worst type of GVHd. I'll never be able to do the things I want to do with my son, and I am so worried or scared about going back to work. Anyway the PDF is also good for family and care givers, not sure about the rest of the site. http://www.nbmtlink.org/documents/spg.pdf
    • Re: Memory problems after transplant ?
      lymphomajourney Registered Users
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      Remember, this is a marathon, not a spring, and some of these effects take time to work themselves out. It is not easy I know. The clincher for me to go ahead was the certainty of not being here today if I did nothing. Hang in there, hopefully the worst effects will go away, and you can find your new normal, one that allows you to do things with your son and others. Andrew

    • Re: Memory problems after transplant ?
      Tex Registered Users
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      I'll join Andrew in the never say never club.  Yes, you're going to miss some things, at least for awhile.  But you're going to get to live a full life.  And however it might not seem worth it today, you never know what might happen tomorrow to make it totally worth it.

       

      Don't give up.  Stay determined and you'll get to the other side of this.  Yes, I have some pains in the butt I have to live with.  But I get to hold my wife every night as I drift off to sleep and I'd do anything to be able to do that as long as possible.

       

      Blessings

    • Re: Memory problems after transplant ?
      KyGuy Registered Users
      Currently Being Moderated

      I'm sorry to hear things have been slow to return.  I don't recall when you had your transplant but things can get better. Talk to someone from you transplant center about things you could be doing to help.  Mine improved when I played the brain games but perhaps there is something else out there that will help yours.  Look for small improvements.  As Andrew said, it's a marathon not a sprint.

       

      Take care,

      Kelly

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