neuroblastoma

Aquagirl18
Aquagirl18 Member Posts: 45
edited March 2014 in Rare and Other Cancers #1
Hi everyone I am new here. I am 23 years old and a survivor of neuroblastoma. I don't know very much about the type of cancer I had except that is a rare childhood type of cancer. I will appricate anyone's reply to this message and I offer my support as well.
Aquagirl18

Comments

  • joev
    joev Member Posts: 1
    #2
    hi auquagirl i just was dx last wed apr.16 that i have a olfactory neuroblastoma tumor.my surgery is sched. for may 5 and im very much afraid
    when did you have yous and what was it?
  • dancer21
    dancer21 Member Posts: 18
    #3
    joev said:

    hi auquagirl i just was dx last wed apr.16 that i have a olfactory neuroblastoma tumor.my surgery is sched. for may 5 and im very much afraid
    when did you have yous and what was it?

    hello joev,
    Ive just read you were due to have surgery last month. How did it go? I had major surgery to remove a large adrenal tumour, that turned out to be ganglioneuroblastoma. Still having tests to see what treatment I need. I hope you have/are recovering well. I would like to hear how your getting on, perhaps compare notes! All the best
    dancer21
  • AJ70
    AJ70 Member Posts: 1
    #4
    Hi!
    I'm a neuroblastoma survivor myself. When I was about 3 or 4 years old, I had a monster trying to invade my kidney. I had surgery & chemo to kill it. Since then, I haven't had any relapse of that horrible monster. I don't know much about the chances of a "relapse", but I pray I won't develop any other type of cancer again. Unfortunately, I had a reaction to the chemo drugs. I'm 32 now & I've been having problems with "memory lapses". I was wondering if you had that problem too? I also was in "special education" classes when I was younger & in highschool too because during my treatments, I was delayed in learning the necessary subjects. Also, how are you feeling too? I guess that's about it & please e-mail me when you can. God Bless! Angela "Matthew 7:7"
  • mrpowers
    mrpowers Member Posts: 1
    #5
    Bone and Muscle Pain

    Hello,

    2years in remission from Glioblstoma ,

    I had both Chemo and Radiation.

    I now frequently have bone and mustle pains (internal pains) that seem like nothing can ease the pain.

    I have been told that this pain is a residual from the chemo and should dissapate on its on within a couple more years.

    Does anyone have any suggestions (for pain releif) other than the emergency room for the severve episodes?

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