Dealing with many long term effects

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  • DrJack
    DrJack Member Posts: 11
    #22
    shirlann said:

    Hi, honey I hope you are on a really good B complex vitamin with separate C & E. If not, you will feel much better soon, if you try it. Hugs, Shirlann

    tired
    I tried all that n more I sleep 12-14 hrs a day n wake up tired and need naps!! LOL out of ideas drugs n last one was ritalin...no luck anyways thanx jack
  • DrJack
    DrJack Member Posts: 11
    #23
    shirlann said:

    Hi, honey I hope you are on a really good B complex vitamin with separate C & E. If not, you will feel much better soon, if you try it. Hugs, Shirlann

    tired
    I tried all that n more I sleep 12-14 hrs a day n wake up tired and need naps!! LOL out of ideas drugs n last one was ritalin...no luck anyways thanx jack
  • leprechaun2
    leprechaun2 Member Posts: 79
    #24
    DrJack said:

    no energy
    I am in the same boat i sleep 12-14 hrs a day n need naps i have seen 5 drs ...NO HELP recently they tried Rotalin....no help any ideas [email protected]

    hope this helps
    My hub slept 20 hrs/day after his 5 weeks of whole brain radiation. Then for 2 more hrs he was waking or falling back asleep. His 2 hrs of wakefulness where while I was at work.

    I was alarmed and missed him so much.

    His doc prescribed provigil and he almost instantly added 10 hrs to his day! It is used for shift workers and it helps with chemobrain.

    Good luck and may God bless!
  • forevergrateful
    forevergrateful Member Posts: 1
    #25
    lindazame said:

    For those of you dealing with late effects there is a great resource on the ACOR mailing lists. It is a discussion group for long term survivors, mostly childhood and adolescent cancers. Here is the URL. http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1
    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=lt-survivors&A=1

    Or you can write directly to me for more information. ([email protected]) The list has over three hundred members and there is no need to feel alone with these problems. Many on the list contributed to the book Childhood Cancer Survivors by Nancy Keene.
    Hope to hear from some of you,
    Linda Zame
    HD (1971)

    LONG TIME SURVIVOR
    HI Linda.
    I hope I can find the book you've mentioned.
    I had cancer of the salivary gland and neck when I was 11 in 1958.
    Two radical neck dissections followed by full body cobalt were the treatments. At one point, I was told I would have to wear a mask.
    I've had 3 children. Two are in their 40s and doing well. Two grandsons, 7 and 9. What a blessing!
    Ny youngest daughter died the night she was born because of a horrible birth defect that the doctor said could likely have been caused by the cobalt.
    She had anencephaly. A very sad time. But made me even more grateful my first two babies were healthy.
    Thyroid issues, neuropathy, neck and shoulder pain and diarrhea are symptoms I attribute to the cobalt.
    But overall, I am truly thankful. I remember well being told I would never be able to have children, and that I was high risk for the cancer to return.
    Thank God, neither of those became true,
    Forever grateful.

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