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Rad Onc Says NED

Kyle Gilmore
Kyle Gilmore CSN Member Posts: 55
in Head and Neck Cancer #1
Ned again...but i got an off the wall answer. She said since there is no signs of recurrence that she wont order a PET or MRI. She said Kyle, believe it or not you beat this thing.

Supposed to be happy right? Me, the first thing I think is about all the new aches and pains I have and how they could be METS and I should get a PET scan right now!lol.. Will shes the doc and a really good one to so I guess I will accept her good news.lol

I have one question for the magic 8 ball though. When I exercise on the tread mill and stretch my neck forward and down I get this shocking feeling shoot through both legs.I remember reading about this somewhere but cant remember the name of it and what it is all about.My cancer was NPC and it was so close to the nerves that go thru the spine into the skull i think the rads might have cooked something it shouldnt have.

Well, thanks alot for everything you all do here on the board and may all our follow ups be NED...Better yet may this moment be filled with contentment, clarity and peace regardless of circumstance.

Kyle
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Comments

  • nwasen
    nwasen CSN Member Posts: 235 Member
    #2
    obsessive thinking
    Man, we all do it don't we? How long have you been out of treatment? I have been for 15 months and have had two PET scans. The other 3 month visits were just touching and looking.
    If you trust this doc then rest easier. You might bring up the subject of what you told us and see what the experts say.
    As long as you go back for follow ups with your doc or docs, I would try and tell the "committee" in your head to back down.
    Happy NED! (I go again on the 19th of April) and I understand about the "committee"!
    Peace
    Nancy
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  • adventurebob
    adventurebob CSN Member Posts: 691 Member
    #3
    Great news Kyle
    Go with the NED from your doc. Aches and pains are just the "new normal" thing. The shock thing is Lhermitte's Syndrome. There's a few posts about it on the board but haven't seen anything for awhile. Mine started a couple months after radiation ended and lasted about 8 months. Kinda funny feeling isn't it? After reading that it's normal I got a little kick out of it as it's not really painful just awakening. My doc hadn't heard of it nor had others docs but people on this board sure knew what it was. Keep doing what you're doing; it's working great. Congratulations,

    AB
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  • Skiffin16
    Skiffin16 CSN Member Posts: 8,305 Member
    #4
    Lhermitte's Syndrome
    Yep, you might even join the Turkey Neck Club before long...another temporary gift from rads.

    AdventureBob, nailed it...many of us have gone through it, I think some of the links might be on the SuperThread actually....

    Lhermitte's Sign

    SUPERTHREAD

    Just a bit of trivia also.....

    DelNative - Jim, was the first to mention it on this board if I remember correctly.

    Congrats on the clean scans, enjoy...

    Best,
    John
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  • longtermsurvivor
    longtermsurvivor CSN Member Posts: 1,842 Member
    #5
    Skiffin16 said:

    Lhermitte's Syndrome
    Yep, you might even join the Turkey Neck Club before long...another temporary gift from rads.

    AdventureBob, nailed it...many of us have gone through it, I think some of the links might be on the SuperThread actually....

    Lhermitte's Sign

    SUPERTHREAD

    Just a bit of trivia also.....

    DelNative - Jim, was the first to mention it on this board if I remember correctly.

    Congrats on the clean scans, enjoy...

    Best,
    John

    You know,
    I had it with my first treatment, lasted about 2 years. Didn't get it this time. Different rads, differently applied.
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  • Hondo
    Hondo CSN Member Posts: 6,636 Member
    #6
    Hi Kyle
    Great news for a great person, I am very glad to hear the good report so happy NED to you my friend

    Hondo
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  • Kyle Gilmore
    Kyle Gilmore CSN Member Posts: 55
    #7
    nwasen said:

    obsessive thinking
    Man, we all do it don't we? How long have you been out of treatment? I have been for 15 months and have had two PET scans. The other 3 month visits were just touching and looking.
    If you trust this doc then rest easier. You might bring up the subject of what you told us and see what the experts say.
    As long as you go back for follow ups with your doc or docs, I would try and tell the "committee" in your head to back down.
    Happy NED! (I go again on the 19th of April) and I understand about the "committee"!
    Peace
    Nancy

    Last treatment was 11-11-11.
    Last treatment was 11-11-11. I know about the committee for sure. Where I am from they call it k-*uck radio... the station to tune into when you know your just *ucked but everyone else says it alright.lol
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  • Kyle Gilmore
    Kyle Gilmore CSN Member Posts: 55
    #8
    Skiffin16 said:

    Lhermitte's Syndrome
    Yep, you might even join the Turkey Neck Club before long...another temporary gift from rads.

    AdventureBob, nailed it...many of us have gone through it, I think some of the links might be on the SuperThread actually....

    Lhermitte's Sign

    SUPERTHREAD

    Just a bit of trivia also.....

    DelNative - Jim, was the first to mention it on this board if I remember correctly.

    Congrats on the clean scans, enjoy...

    Best,
    John

    I already know about the turkey neck
    And I am still amazed that the time in my life that I have a triple chin is when I am in need of gaining weight.
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  • Kyle Gilmore
    Kyle Gilmore CSN Member Posts: 55
    #9
    Hondo said:

    Hi Kyle
    Great news for a great person, I am very glad to hear the good report so happy NED to you my friend

    Hondo

    Thanks Hondo
    now i just got to work on getting my stamina back. Its still a push to work beyond 20-25 hours a week.
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  • Jimbo55
    Jimbo55 CSN Member Posts: 590
    #10
    Kyle
    This thing sure brings out the hypochondriac in all of us. But, really, it sure is a good sign that your doc is so confident that you don't require the PET or MRI for now. Enjoy life. Cheers.

    Jimbo
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  • NeoTheron91
    NeoTheron91 CSN Member Posts: 75
    #11
    Always good
    Without MRI or PET ....

    so great ...NED

    cheers,
    Neo
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