Long lasting ALL symptoms

mc2001
mc2001 Member Posts: 343
edited March 2014 in Leukemia #1
Hi, I'm fairly new to this. But I was diagnosed with ALL when I turned 21. Was treated very aggressively and had very aggressive side effects. I am 29 years old now, but I still have some memory and fatigue problems which still warrant disability. Am I an odd ball, or is there someone else with chronic symptoms? I get the impression that people think I'm just pretending. I would really like to hear from anyone. Thanks a bunch.
-Michael
PS: I designed a leukemia web site and there is a lot of information. Just an FYI if you are interested and/or lookig for yourself or a loved one. Anyone is welcome to email me. Thank you.

my web site: www.geocities.com/leukemia_lymphoma
my email: leu_lym@yahoo.com

Comments

  • dickl
    dickl Member Posts: 39
    #2
    mc2001,
    You are not pretending, they are called late effects. My son had a BMT for AML in 1996 at age 7. He has great memory problems and chronic fatigue among many long term effects of heavy chemo. You can take neuropsych tests that will show memory and neurological effects. There is a great book by Wende Hobbe from Children's Hospital of Philadelhia about specific treatments and the specific late effects they cause .I think the book is called " Surviving Childhood Cancer". You can get it from Amazon.com
    Feel free to e-mail me here if there's anything I can help with. I check this site regularly.

    dickl
  • josue
    josue Member Posts: 1
    #3
    I am a 30 year-old male from Florida. I was dx with ALL 2 months from my 21st birthday. I also suffer from some memory problems, fatigue and peripheral neuropathy.

    I think people have the misunderstanding that because you maybe on remission that means (to them) that you should have no symptoms whatsoever. Chemo side effects can last a lifetime. I have learned to deal with the pain in my shoulders, hands and legs as well as the memory problem; sometimes I just break the routines to try to keep my brain active thinking instead of just reacting. The fatigue is the worst because I am tired all the time and sometimes I just want to lay down for a nap and feel so guilty about it.

    The best thing that happened to me was my wife, which I married while on my first course of chemo, and my two beautiful daughters. I also have a boy to be born next month. Really that's what keeps me going. That's what life is all about anyway.

    Good luck to all of you.
  • Mscortney
    Mscortney Member Posts: 9
    #4
    I have been in remission from ALL for nearly 18 years. Even through my teens I had felt much the same way. I always felt that i was alone in feeling this way. This posting was an eye opener for me. Thank you.
  • Meggieblue
    Meggieblue Member Posts: 1
    #5
    Dear Michael,
    Reading your message confirmed a fear I had been feeling since I began chemo in Oct.2002. I, too, recieved very aggressive treatment that included radiation to the brain. However, I'm glad that these feelings of memory loss and fatigue are "not all in my head". I am 21 now,thankfully in remission, and I have recently returned to college. A math course that I took last semester forced me to realize that my mind was not how it used to be, learning-wise. I just hope it is temporary, as my oncologist said. Thank you for addressing this. I felt very alone, thinking there was no one else out there with this problem.
    ~Meghan

    P.S. If you ever feel like talking, my email is trixi435@hotmail.com

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