Need recommendation to sooth the throat from Radiation

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Comments

  • dales2loud
    dales2loud Member Posts: 45
    Keep up with the soda /salt
    I stopped the soda/salt aftertreatment and had to deal with 6 months of Thrush and "hairy tongue. I did not think the soda/salt was doing any good but it was, don't be in a hurry to get off mouth wash's until you are better healed.
  • cureitall66
    cureitall66 Member Posts: 913

    no lidocaine?
    what's the point? ;-)

    I've had two different MM recipes:
    first (thrush formula) was lidocaine, benadryl, and nystatin.
    second was lidocaine, benadryl, and maalox.
    sure, the lidocaine is only temp. relief...but even temporary helps at 2AM when you need to sleep.

    The reason for no Lidocaine....
    They told him no lidocaine because of the tongue condition from radiation. They are afraid he will aspirate it into his lungs

    He is in excruitiating pain right now. They are letting him have 15 mg Morphine twice daily. It's not helping the tongue.
  • cureitall66
    cureitall66 Member Posts: 913

    I'm surprised that they put no Lidocaine in the MM....
    that's the thing that numbs the mouth and throat! I think that every phramacy or Oncologist has their own recipie, tho (before I got my MM, I looked it up on the internet, and there were many recipies)...I'd ask why not. My Onc first gave me MM, then prescribed straight Lidocaine.

    p

    See my post above for reason...
    P,

    See my post above to Blackswampboy...
  • cureitall66
    cureitall66 Member Posts: 913
    CivilMatt said:

    one more word
    Cureitall66,

    My magic Mouth Wash must have been the “Gold Standard” because it worked great for me and I did swallow it and never over dosed on it. I never ever took more than the maximum 10 mls that little funnel would hold and usually got by on 2 to 5 mls at a time. It worked great for my delicate throat and sweet mouth. I agree, you can hold, swish and spit, but you don’t get the full throat relief without sip swallowing the juice. Maybe the other recipes used for Magic Mouth Wash were not as magic as mine was. It got me through a few bad weeks last February and March. It helped me sleep through the night and enabled me to drink at least one meal a day (the rest by PEG). If you are unfortunate as I was with similar cancer and you have some Magic Mouth Wash made with the same recipe as mine was you are ready to do battle with mouth and throat pain.

    Best,

    Matt

    You had rads to BOT right?...

    Matt,

    Treatment for him is BOT and neck.

    He doesn't seem to be getting any relief for tongue. He has the Magic Mouth Wash he can do twice a day. He was told my NP that he could swallow it. The bottle says not to.

    His tongue is so tore up and painful. He can hardly stand it. Broke down on me today. The apparent reason for no Lidocaine is because they said he could aspirate it into his lungs due to the condition of tongue.

    Allowed 15Mg of Morphine twice daily. Can't sleep either.

    Did you do any of the L-Glutamine?

    He's getting his Rads right now. I'd like him to talk to them there and see if they can offer any other suggestions.
  • D Lewis
    D Lewis Member Posts: 1,581 Member

    You had rads to BOT right?...

    Matt,

    Treatment for him is BOT and neck.

    He doesn't seem to be getting any relief for tongue. He has the Magic Mouth Wash he can do twice a day. He was told my NP that he could swallow it. The bottle says not to.

    His tongue is so tore up and painful. He can hardly stand it. Broke down on me today. The apparent reason for no Lidocaine is because they said he could aspirate it into his lungs due to the condition of tongue.

    Allowed 15Mg of Morphine twice daily. Can't sleep either.

    Did you do any of the L-Glutamine?

    He's getting his Rads right now. I'd like him to talk to them there and see if they can offer any other suggestions.

    Cris
    Ask again for the lidocaine. Tell them he won't swallow it, he will just swish and spit. And he will promise to hold his breath whhile doing so.

    Also, many folks on here who had a lot of pain did better with the fentanyl patch. Also, someone here once mentioned a fentanyl lollipop. Maybe that would help to concentrate the pain relief directly on the tongue.

    Deb
  • cureitall66
    cureitall66 Member Posts: 913
    D Lewis said:

    Cris
    Ask again for the lidocaine. Tell them he won't swallow it, he will just swish and spit. And he will promise to hold his breath whhile doing so.

    Also, many folks on here who had a lot of pain did better with the fentanyl patch. Also, someone here once mentioned a fentanyl lollipop. Maybe that would help to concentrate the pain relief directly on the tongue.

    Deb

    Will attempt to beg for Lidocaine ....
    He's going to see if they will give it to him. I don't know about the fentanyl patch. He has had a heart attack and triple bypass in the past, so they are cautious on pain meds they give him. He is allowed the morphine(15MG)twice daily
  • cureitall66
    cureitall66 Member Posts: 913

    Keep up with the soda /salt
    I stopped the soda/salt aftertreatment and had to deal with 6 months of Thrush and "hairy tongue. I did not think the soda/salt was doing any good but it was, don't be in a hurry to get off mouth wash's until you are better healed.

    I'll see to it...
    Thanks for sharing that...I will see to it that he still keeps up with that as well.
  • VivianLee5689
    VivianLee5689 Member Posts: 546

    I'll see to it...
    Thanks for sharing that...I will see to it that he still keeps up with that as well.

    Magic Mouthwash
    I am with everyone else. David has had base of tongue surgery and was given the MM with lidocaine. He is just not supposed to swallow it.
  • luvofmylif
    luvofmylif Member Posts: 344

    Magic Mouthwash
    I am with everyone else. David has had base of tongue surgery and was given the MM with lidocaine. He is just not supposed to swallow it.

    us too
    My husband had BOT surgery and radical neck dissections x 2. First surgery in Aug and six weeks later had second surgery. He has been using Miracle mouthwash for about 6 weeks because he had some thrush post op. He has continued to use it since and no thrush. I so hope things get better for your loved one. It's torture going thru this. But, it will be worth it in the end...

    Joan
  • cureitall66
    cureitall66 Member Posts: 913
    Came home with a Morphine Patch....
    Hoping the Morphine patches will work. No budging on the lidocaine. I just don't get it...but they are concerned badly about the aspiration to the lungs with his tongue in that condition.

    The radiation has been horrific to his tongue. The side (left) to which they are radiating for the neck mass/BOT is the side the tongue is most affected. It literaly looks like someone took a jagged knife to the side of it and cut it zig zag and then stitched it with some staples and left a bunch of bumps all over it. UNBELIEVABLE. He can barely talk or eat at this point. I think I will be asking for advice on a PEG next week...unless this morphine kicks in.

    We are going to get back to the salt/baking soda regiment as he backed off of it when starting the MM. I will take the advice of others and have him continue both and try to locate some L-Glutamine.

    The hospital told him that H & N cancer is the worst of treatment in comparison to other cancer treatments just simply because of the mouth problems(infections, eating, swallowing, dehydrating, lack of nutrition, etc) .

    We'll get through this...one day at a time.
  • D Lewis
    D Lewis Member Posts: 1,581 Member

    Came home with a Morphine Patch....
    Hoping the Morphine patches will work. No budging on the lidocaine. I just don't get it...but they are concerned badly about the aspiration to the lungs with his tongue in that condition.

    The radiation has been horrific to his tongue. The side (left) to which they are radiating for the neck mass/BOT is the side the tongue is most affected. It literaly looks like someone took a jagged knife to the side of it and cut it zig zag and then stitched it with some staples and left a bunch of bumps all over it. UNBELIEVABLE. He can barely talk or eat at this point. I think I will be asking for advice on a PEG next week...unless this morphine kicks in.

    We are going to get back to the salt/baking soda regiment as he backed off of it when starting the MM. I will take the advice of others and have him continue both and try to locate some L-Glutamine.

    The hospital told him that H & N cancer is the worst of treatment in comparison to other cancer treatments just simply because of the mouth problems(infections, eating, swallowing, dehydrating, lack of nutrition, etc) .

    We'll get through this...one day at a time.

    Cris
    Does your Sig Other have dental work? Fillings or crowns? During radiation, both sides of my tongue were very severely burned. I attributed it to radiation scatter off my dental work - I have crowns and fillings, top and bottom on both sides. It got worse and worse every day. Eventually I figured out to pull my tongue up and back a little during the radiation treatments, so it wasn't pressed up against the dental work. The burns diminished some after that.

    I know they tell us not to move at all, within the radiation mask. My tumor was BOT, and I fretted a bit about the subtle repositioning of my tongue in the radiation field. It did, however, appear to reduce the burning somewhat.

    I still have scarring on the sides of my tongue.

    Deb
  • D Lewis
    D Lewis Member Posts: 1,581 Member

    Came home with a Morphine Patch....
    Hoping the Morphine patches will work. No budging on the lidocaine. I just don't get it...but they are concerned badly about the aspiration to the lungs with his tongue in that condition.

    The radiation has been horrific to his tongue. The side (left) to which they are radiating for the neck mass/BOT is the side the tongue is most affected. It literaly looks like someone took a jagged knife to the side of it and cut it zig zag and then stitched it with some staples and left a bunch of bumps all over it. UNBELIEVABLE. He can barely talk or eat at this point. I think I will be asking for advice on a PEG next week...unless this morphine kicks in.

    We are going to get back to the salt/baking soda regiment as he backed off of it when starting the MM. I will take the advice of others and have him continue both and try to locate some L-Glutamine.

    The hospital told him that H & N cancer is the worst of treatment in comparison to other cancer treatments just simply because of the mouth problems(infections, eating, swallowing, dehydrating, lack of nutrition, etc) .

    We'll get through this...one day at a time.

    Cris
    Double post - sorry.

    Deb
  • phrannie51
    phrannie51 Member Posts: 4,716

    Came home with a Morphine Patch....
    Hoping the Morphine patches will work. No budging on the lidocaine. I just don't get it...but they are concerned badly about the aspiration to the lungs with his tongue in that condition.

    The radiation has been horrific to his tongue. The side (left) to which they are radiating for the neck mass/BOT is the side the tongue is most affected. It literaly looks like someone took a jagged knife to the side of it and cut it zig zag and then stitched it with some staples and left a bunch of bumps all over it. UNBELIEVABLE. He can barely talk or eat at this point. I think I will be asking for advice on a PEG next week...unless this morphine kicks in.

    We are going to get back to the salt/baking soda regiment as he backed off of it when starting the MM. I will take the advice of others and have him continue both and try to locate some L-Glutamine.

    The hospital told him that H & N cancer is the worst of treatment in comparison to other cancer treatments just simply because of the mouth problems(infections, eating, swallowing, dehydrating, lack of nutrition, etc) .

    We'll get through this...one day at a time.

    You can use MM and L-Glutamine at the same time....
    and I kept a plastic bottle with the L-glutamine next to my chair all the time, as it was the just about the only thing I could put into my mouth that didn't sting. I also kept up on the salt/soda rinses. L-glutamine is an amino acid, and not harmful in any amount...

    I sure hope the morphine patches work better for him...poor guy. Mouth pain is just about as bad as it gets, I think...

    p
  • cureitall66
    cureitall66 Member Posts: 913
    D Lewis said:

    Cris
    Does your Sig Other have dental work? Fillings or crowns? During radiation, both sides of my tongue were very severely burned. I attributed it to radiation scatter off my dental work - I have crowns and fillings, top and bottom on both sides. It got worse and worse every day. Eventually I figured out to pull my tongue up and back a little during the radiation treatments, so it wasn't pressed up against the dental work. The burns diminished some after that.

    I know they tell us not to move at all, within the radiation mask. My tumor was BOT, and I fretted a bit about the subtle repositioning of my tongue in the radiation field. It did, however, appear to reduce the burning somewhat.

    I still have scarring on the sides of my tongue.

    Deb

    Yes...he has fillings and a few crowns...
    I thought that's what the mouth guard during treatment helped to prevent? I will give him this piece of advice and have him check with the rad people and see if they can get him to do this during those treatment.

    Thanks for sharing this Deb.
  • cureitall66
    cureitall66 Member Posts: 913

    You can use MM and L-Glutamine at the same time....
    and I kept a plastic bottle with the L-glutamine next to my chair all the time, as it was the just about the only thing I could put into my mouth that didn't sting. I also kept up on the salt/soda rinses. L-glutamine is an amino acid, and not harmful in any amount...

    I sure hope the morphine patches work better for him...poor guy. Mouth pain is just about as bad as it gets, I think...

    p

    Thanks for the advice....
    P-

    I will have him do all the above and see if we can get this thing controlled.

    How did you say you mixed that L-Glutamine? And you got in a powder form correct? I contacted Walmart and they only have it in a pill form. That probably wouldn't work unless we crushed it.

    C-
  • phrannie51
    phrannie51 Member Posts: 4,716

    Thanks for the advice....
    P-

    I will have him do all the above and see if we can get this thing controlled.

    How did you say you mixed that L-Glutamine? And you got in a powder form correct? I contacted Walmart and they only have it in a pill form. That probably wouldn't work unless we crushed it.

    C-

    You might have to get the powdered
    form at a health food store (I know they have it here in the health food store)...My Onc sold it right in his office, so I never had to search it out. I have a little funnel that I'd dump two tablespoons into the bottle, then fill the bottle up about half way...this was just a store bought water bottle, maybe full it would have been 16 oz.

    p
  • phrannie51
    phrannie51 Member Posts: 4,716

    Thanks for the advice....
    P-

    I will have him do all the above and see if we can get this thing controlled.

    How did you say you mixed that L-Glutamine? And you got in a powder form correct? I contacted Walmart and they only have it in a pill form. That probably wouldn't work unless we crushed it.

    C-

    You might have to get the powdered
    form at a health food store (I know they have it here in the health food store)...My Onc sold it right in his office, so I never had to search it out. I have a little funnel that I'd dump two tablespoons into the bottle, then fill the bottle up about half way...this was just a store bought water bottle, maybe full it would have been 16 oz.

    p