Questions concerning tips for XRT

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PJ47
PJ47 Member Posts: 376
in Head and Neck Cancer #1

Hello again,

I think I have most of what I need from reading the thread on RT, but still have a few questions to ask the group.  My nurse gave me some ALRA therapy lotion to use but not less than 4 hours before treatments.  

I started the L-Glutamine powder from Vitacost.  It has a small scoop that has 5G in it and I am not sure how much to take daily?  

I asked the nurse about Muguard and she said it had to be ordered from the drug company and that it is usually not given as a preventative, is very expensive and insurance does not cover it!  Not sure what to do about this one.

Thanks in advance,

PJ

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  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    all good questions

    The mugard is something that some of us swear by.  And some of us had it prescribed routinely, but some not.  I was given a bunch by my radiation oncologist, but only used it from time to time.  I don't think there is a standard, and yes it is expensive.  Someone else will chime in about glutamine.  I have no experience. 

     

    best

     

    Pat

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    The nurse is wrong...

    the whole reason for Mugard is as a preventative....it doesn't work as anything other than prevention of mouth sores.  Once mouth sores are established, and going strong, Mugard doesn't work.  It is expensive, and now that it's not in trials any longer, I don't think they dicker and deal like they did when I was in treatment a year ago (I got mine for $100....someone else dickered a little better and got theirs for $50).   I got mine from the Oncologist.....so maybe ask yours since the rad nurse doesn't even realize what it's for.

    "What is MuGard?
    MuGard Mucoadhesive Oral Wound Rinse is a mouth rinse used for prevention and relief of the symptoms of oral mucositis."

    I used about a tablespoon and a half of L-glutamine....give or take....in 8 oz. of water....I don't think there is a set standard for it anymore than there is for the salt/soda mixture.  During adjuvent chemo, it was the only thing I could stand orally (I couldn't even handle straight water in my mouth), so sipped a lot of it...probably 3 or 4 glasses a day. 

    There are many lotions and potions for neck burns.....my Rad doc suggested Calendula cream and Aloe for me, and they worked well.

    p

  • PJ47
    PJ47 Member Posts: 376
    #4
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    phrannie51 said:

    The nurse is wrong...

    the whole reason for Mugard is as a preventative....it doesn't work as anything other than prevention of mouth sores.  Once mouth sores are established, and going strong, Mugard doesn't work.  It is expensive, and now that it's not in trials any longer, I don't think they dicker and deal like they did when I was in treatment a year ago (I got mine for $100....someone else dickered a little better and got theirs for $50).   I got mine from the Oncologist.....so maybe ask yours since the rad nurse doesn't even realize what it's for.

    "What is MuGard?
    MuGard Mucoadhesive Oral Wound Rinse is a mouth rinse used for prevention and relief of the symptoms of oral mucositis."

    I used about a tablespoon and a half of L-glutamine....give or take....in 8 oz. of water....I don't think there is a set standard for it anymore than there is for the salt/soda mixture.  During adjuvent chemo, it was the only thing I could stand orally (I couldn't even handle straight water in my mouth), so sipped a lot of it...probably 3 or 4 glasses a day. 

    There are many lotions and potions for neck burns.....my Rad doc suggested Calendula cream and Aloe for me, and they worked well.

    p

    Thank you Phrannie

    I thought the nurse was wrong and will ask again tomorrow morning when after radiation.  I think it will be very expensive.  I do not want mouth sores with that mouth guard being pushed down on by the mask.  I ordered the calendula cream and have an aloe plant.  

    Our daughter says you have snow already this week,

     

    PJ

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    PJ47 said:

    Thank you Phrannie

    I thought the nurse was wrong and will ask again tomorrow morning when after radiation.  I think it will be very expensive.  I do not want mouth sores with that mouth guard being pushed down on by the mask.  I ordered the calendula cream and have an aloe plant.  

    Our daughter says you have snow already this week,

     

    PJ

    Maybe print out

    the how's and why's of Mugard and hand to the nurse.....she might as well know what she's talking about for her next patients. Laughing 

    Yes...we got snow this week.  I flew in on Sunday night from Seattle, and there was 3 inches on my car at the airport, but none in town....then woke up yesterday to a couple inches on the ground.  I really am not a fan of snow....or cold for that matter....someday I'm going to be a snowbird, but not until I'm without horses. 

    p

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