Radiation fibrosis syndrome

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caffinated1
caffinated1 Member Posts: 32
in Head and Neck Cancer #1

I heard that vitamin E can reduce the cramping. Any truth to that? I'm 4 years into remission but the lingering after effects won't let go. Help.

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  • phrannie51
    phrannie51 Member Posts: 4,716
    edited June 2016 #2
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    Hi....on the neck fibrosis...

    My RO put me on 400 mgs of Trental, 3 times a day...PLUS 400 iu's of Vitamin E every day to help reduce fibrosis.  I wonder if you should contact your RO or Oncologist and ask for the medication and see if that helps.  I've also heard of several folks who have been getting botox to help with the cramping.  Maybe check that out too with the docs?

    p

  • LiseA
    LiseA Member Posts: 266
    #3
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    I really get annoyed when I

    I really get annoyed when I read about symptoms after radiation, because my radiologist said it's easy and barely any side effects. 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #4
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    That's crazy

    The very idea you could target any part of the human body with intense radiation designed to destroy tissue and not have side effects is ludicrous.

    When they say they are going to shrink the tumor they do that by destroying as much as possible.

    Putting it in perspective: it could save your life.

  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #5
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    There is no tumor to shrink

    There is no tumor to shrink in my case. They found one lymph node involved.

    I think this radiologist is a bit out there when dealing with him. He's supposed to be brilliant, but in his own world. Never gave me an inkling of what to expect. Said radiation is easy, and I'll do fine. Everything I learned I learned here, from the real pros who had cancer and fought it. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    Lise....radiologists aren't the same as most

    physicians....they're more like scientists than Drs. and I hear of darn few who would be considered warm.  There are many side effects to rads, that come down the pike...sometimes many years out.  Getting a lymph node radiated is for a reason....I've had the same side of my neck done twice in the last 3 years.  I ran into a professional masseuse today at a meeting.  He did my neck for at most, 5 minutes....I can't believe how much it loosened up.  I think I'll sign up for a massage every couple of weeks.

    p

  • SusanUES
    SusanUES Member Posts: 125
    edited June 2016 #7
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    What kind of an a-hole says radiation is "easy"???

    Fine, pal, let's strap you in a mask, shove a bite block in your mouth and microwave your neck and mouth for six weeks. Grrrrrrrrrr

    Phrannie, glad that massage helped...sounds good!

  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #8
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    Susan, I don't think I'll

    Susan, I don't think I'll ever forget him telling me that.  Tomorrow is week four for me, and I'm finding the raw parts of my mouth to be very painful. I keep wondering what's easy about this.  He's never had radiation to neck area. One of the nurses said most of the side effects and how we react to them is a head thing. Basically he said if we go into saying we will be fine and not have mouth sores, we won't get them.  I don't want to wish evil on any one, but can't help thinking he ought  find himself going through H&N surgery/radiation, then tell me how easy it was. 

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #9
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    I get them in the right side

    I get them in the right side of my neck but have learned to ward them off by moving a certain way. I mostly get them when yawning. But when I can't ward them off they huret like hell. I've gotten them while driving and had to pull over because I was afraid I was going to pass out. Never tried vitamins but I may look in to.

          Jeff

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #10
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    LiseA said:

    I really get annoyed when I

    I really get annoyed when I read about symptoms after radiation, because my radiologist said it's easy and barely any side effects. 

    Ugh!

    Sounds like my rad onc.  I got rid of him towards the end of treatment.  I vomited for 5 straight days (even water) and was dehydrated.  I did NOT want a PEG originally, but by then I was begging for one.  His advice was "toughen up and drink some Musinex". 

    I started seeing his associate and had a PEG tube the next day. 

     Before treatment he had told me "it won't be too bad, but you'll be uncomfortable by about week 4".   

     

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