Magic Mouthwash

cadharose
cadharose Member Posts: 52
edited June 2013 in Head and Neck Cancer #1

I  just tried Magic Mouthwash for the first time today and I am disappointed with the results (especially for the price). It is primarily my throat and upper palate that are sore and make it difficult for me to drink things like fruit juice or V8 juice. I have twice used it as directed, gargled with it, swallowed it down slowly, and gave it a few minutes to fully kick in before drinking anything, but it only made a minor improvement.

Any thoughts on how to make it more effective?

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Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    Does the kind you got

    have lidocaine in it?  Some recepies don't.....and the recepie you get is usually the one the pharmacist likes (there are MANY recepies for MM)......you can also ask your Onc for pure vicious )LOL..not vicious, but I can't remember the word) Lidocain....it doesn't have any of the pepto or anti-thrush stuff in it.  It's an instant numbing....it numbed me so much the first time I took it, I couldn't swallow at all for 10 minutes. 

    You're doing good if you can do fruit juice, especially something as acidy as V8 or tomato juice....I still can't do them.

    p

  • cadharose
    cadharose Member Posts: 52

    Does the kind you got

    have lidocaine in it?  Some recepies don't.....and the recepie you get is usually the one the pharmacist likes (there are MANY recepies for MM)......you can also ask your Onc for pure vicious )LOL..not vicious, but I can't remember the word) Lidocain....it doesn't have any of the pepto or anti-thrush stuff in it.  It's an instant numbing....it numbed me so much the first time I took it, I couldn't swallow at all for 10 minutes. 

    You're doing good if you can do fruit juice, especially something as acidy as V8 or tomato juice....I still can't do them.

    p

    Yes, it has lidocaine in it,

    Yes, it has lidocaine in it, but I don't know at what strength. Thanks for the tip about the pure viscous lidocaine. I might ask for that. It's funny because it totally numbed the front of my mouth but didn't seem to do as much for my upper palate and throat.

    The doctors and staff tell me that drinks like Boost and Ensure have everything your body needs, but after drinking them exclusively for hours I definitely feel better when I drink V8. It's the only way I can get vegetables into me.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    mine worked like a charm, Oregon vintage

    cadharose,

    It may be your MM mixture.  Mine was great, so great that I went through 6 bottles of the stuff.  It helped me sleep; drink and I would take a bit in the parking lot just before rads.

    So sorry it is not working for you, it is one of my top 3 things which got me through treatment side effects.

    All I can say is don’t give up there are a lot of things in the H&N medicine chest.

    Matt

  • donfoo
    donfoo Member Posts: 1,771 Member
    cadharose said:

    Yes, it has lidocaine in it,

    Yes, it has lidocaine in it, but I don't know at what strength. Thanks for the tip about the pure viscous lidocaine. I might ask for that. It's funny because it totally numbed the front of my mouth but didn't seem to do as much for my upper palate and throat.

    The doctors and staff tell me that drinks like Boost and Ensure have everything your body needs, but after drinking them exclusively for hours I definitely feel better when I drink V8. It's the only way I can get vegetables into me.

    maybe

    not sure since I don't have lidocaine in my MM formula but if it was it is likely to be watered down from the lidocaine if it is pure lidocaine. The pure stuff says lidocaine, oral toipical solution (Viscous) 2%.

    I still may ask for a MM version that has lidocaine but now I can ally it separately and more directly to the sore in the mouth. Of course I can not apply directy to sore or patches on back of throat so I swish some pure stuff with head back and slowly swallow and good to go that way.

    My MO specifies the ingredients in the MM. I see the pharma order and it has the specifc stuff going in. all the pharmacy does is compound it.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Like Moonshine from the Hollar

    Each pharmacy has their own method for MM. The first batch I got was a swish and spit and the 2nd batch was from Johns Hopkins and they called it Larry's Solution which was swish and swallow. Both numbed my mouth and throat. Just don't try to take pills after using it as you can't feel them in your mouth! ~lol~ 

    Fortunately, as I heal, I need less and less. And you're right.. the stuff ain't cheap!

    "T"

  • donfoo
    donfoo Member Posts: 1,771 Member
    fishmanpa said:

    Like Moonshine from the Hollar

    Each pharmacy has their own method for MM. The first batch I got was a swish and spit and the 2nd batch was from Johns Hopkins and they called it Larry's Solution which was swish and swallow. Both numbed my mouth and throat. Just don't try to take pills after using it as you can't feel them in your mouth! ~lol~ 

    Fortunately, as I heal, I need less and less. And you're right.. the stuff ain't cheap!

    "T"

    curious

    just curious guys, how much is larry making off this pink bug spit jiuce? lol LoL lOl Tongue Out

  • HelenBack
    HelenBack Member Posts: 87 Member
    Just a thought

    I can certainly understand your need for veggies but perhaps you could find something that doesn't have tomatoes or citrus. Anything containing either of those ingredients burned my husband's throat but he could drink carrot, beet, celery, greens in juices. 

    Helen

  • cadharose
    cadharose Member Posts: 52
    HelenBack said:

    Just a thought

    I can certainly understand your need for veggies but perhaps you could find something that doesn't have tomatoes or citrus. Anything containing either of those ingredients burned my husband's throat but he could drink carrot, beet, celery, greens in juices. 

    Helen

    Thanks for the advice. I love

    Thanks for the advice. I love those veggies. I will give that a try. By the way, I never make my own juice so I don't know how. Do you cook the vegetables first before pureeing them?

  • HelenBack
    HelenBack Member Posts: 87 Member
    cadharose said:

    Thanks for the advice. I love

    Thanks for the advice. I love those veggies. I will give that a try. By the way, I never make my own juice so I don't know how. Do you cook the vegetables first before pureeing them?

    Not cooked. And you would need a real juicer.

    If you don't already have a juicer, I'm not sure you should go through the trouble. Many people get seriously into juicing, but juicers are expensive and unless you're sure that you're up for it, and have access to fresh veggies year round, I'd just try to find an another source, something like v-8 but not tomato-y. Knudsen sells a bottled carrot juice, and, if you live in an area that has health food stores you would likely find fresh or bottled (flash-pasturized) juices with greens.

    I made smoothies for my husband with bottled apple juice, yogurt, protein powder and kale. He was able to get them down for a while, but then they were too textured for him. But at least they weren't acidic.

    Maybe cream of broccoli soup would satisfy your veggie cravings? That was something that he's been able to eat, off and on. Very easy to make, and you can boost calories by making sure to use butter and real cream. Or, just a veggie soup, without tomato, of course. Maybe potato, carrot, zucchini, cabbage, corn in a watery broth? Puree'd?

    We love our veggies too,

    Helen

  • hwt
    hwt Member Posts: 2,328 Member
    HelenBack said:

    Not cooked. And you would need a real juicer.

    If you don't already have a juicer, I'm not sure you should go through the trouble. Many people get seriously into juicing, but juicers are expensive and unless you're sure that you're up for it, and have access to fresh veggies year round, I'd just try to find an another source, something like v-8 but not tomato-y. Knudsen sells a bottled carrot juice, and, if you live in an area that has health food stores you would likely find fresh or bottled (flash-pasturized) juices with greens.

    I made smoothies for my husband with bottled apple juice, yogurt, protein powder and kale. He was able to get them down for a while, but then they were too textured for him. But at least they weren't acidic.

    Maybe cream of broccoli soup would satisfy your veggie cravings? That was something that he's been able to eat, off and on. Very easy to make, and you can boost calories by making sure to use butter and real cream. Or, just a veggie soup, without tomato, of course. Maybe potato, carrot, zucchini, cabbage, corn in a watery broth? Puree'd?

    We love our veggies too,

    Helen

    Donfoo

    My last large bottle (480ML) was $25. I think I paid $20 while I was in tx. I'm a year out of tx and still use it periodically. Still not so good with fruit but did enjoy some watermelon last week with no issues. I use it more now when I have a real dry spell, it helps relieve the discomfort,

  • cadharose
    cadharose Member Posts: 52
    HelenBack said:

    Not cooked. And you would need a real juicer.

    If you don't already have a juicer, I'm not sure you should go through the trouble. Many people get seriously into juicing, but juicers are expensive and unless you're sure that you're up for it, and have access to fresh veggies year round, I'd just try to find an another source, something like v-8 but not tomato-y. Knudsen sells a bottled carrot juice, and, if you live in an area that has health food stores you would likely find fresh or bottled (flash-pasturized) juices with greens.

    I made smoothies for my husband with bottled apple juice, yogurt, protein powder and kale. He was able to get them down for a while, but then they were too textured for him. But at least they weren't acidic.

    Maybe cream of broccoli soup would satisfy your veggie cravings? That was something that he's been able to eat, off and on. Very easy to make, and you can boost calories by making sure to use butter and real cream. Or, just a veggie soup, without tomato, of course. Maybe potato, carrot, zucchini, cabbage, corn in a watery broth? Puree'd?

    We love our veggies too,

    Helen

    You're right. Those buggers

    You're right. Those buggers are expensive. I just looked at them at amazon.com. Maybe I'll try making soup and drinking it at room temp instead. I like your recipe with the beets; some folks don't like them, but I sure do :)

  • donfoo
    donfoo Member Posts: 1,771 Member
    HelenBack said:

    Not cooked. And you would need a real juicer.

    If you don't already have a juicer, I'm not sure you should go through the trouble. Many people get seriously into juicing, but juicers are expensive and unless you're sure that you're up for it, and have access to fresh veggies year round, I'd just try to find an another source, something like v-8 but not tomato-y. Knudsen sells a bottled carrot juice, and, if you live in an area that has health food stores you would likely find fresh or bottled (flash-pasturized) juices with greens.

    I made smoothies for my husband with bottled apple juice, yogurt, protein powder and kale. He was able to get them down for a while, but then they were too textured for him. But at least they weren't acidic.

    Maybe cream of broccoli soup would satisfy your veggie cravings? That was something that he's been able to eat, off and on. Very easy to make, and you can boost calories by making sure to use butter and real cream. Or, just a veggie soup, without tomato, of course. Maybe potato, carrot, zucchini, cabbage, corn in a watery broth? Puree'd?

    We love our veggies too,

    Helen

    I am confused, yes, more than usual

    "Magic Mouthwash" as I use the term is a compounded prescription of several drugs specified either by the phramacist or the prescribing doctor. AFAIK Amazon does not sell prescription drugs, so are we talking about different things?

     

    Also, maybe we are a short hop from Tokyo where a small cup of coffe is 25 bucks and a "coffin" hotel room runs a hundred bucks, but out here skipping rocks off the Pacfic 25 bucks for a compounded prescription seems really cheap. I mean the pharmacists actually has to mix something rather than count pills. Now if the PC want to bust my chops for that let's have a go. .o. lolll lol Lol LO LOL LOL. Ah, practicing my LOL skills.   lol

    I just post this given the comment is we are amonst some of the most elite when it comes to ringing the register at the pharmacy. I hear those little plastic bags dispensed by the clinic/hospital pharmacy can be THOUSANDS of $$$ each, so 25 bucks is like bandaids in comparison.

    btw - Matt is my new hero and mentor for the month of June. Congratsulations! 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    donfoo said:

    I am confused, yes, more than usual

    "Magic Mouthwash" as I use the term is a compounded prescription of several drugs specified either by the phramacist or the prescribing doctor. AFAIK Amazon does not sell prescription drugs, so are we talking about different things?

     

    Also, maybe we are a short hop from Tokyo where a small cup of coffe is 25 bucks and a "coffin" hotel room runs a hundred bucks, but out here skipping rocks off the Pacfic 25 bucks for a compounded prescription seems really cheap. I mean the pharmacists actually has to mix something rather than count pills. Now if the PC want to bust my chops for that let's have a go. .o. lolll lol Lol LO LOL LOL. Ah, practicing my LOL skills.   lol

    I just post this given the comment is we are amonst some of the most elite when it comes to ringing the register at the pharmacy. I hear those little plastic bags dispensed by the clinic/hospital pharmacy can be THOUSANDS of $$$ each, so 25 bucks is like bandaids in comparison.

    btw - Matt is my new hero and mentor for the month of June. Congratsulations! 

    mm good

    Don,

    I don’t know whether to trust you or taze you, but I’ll say 25 bucks is far less than I paid and I bought lots.  I still have a bottle of Oregon vintage pink.  I can’t believe I loved the stuff it tastes so bad now.  Score one point for losing my taste buds.

    There seems to be an infinite number of mixtures.  I don’t know what was in mine; there was nothing on the label.  Maybe, it truly is a secret recipe.

    Matt

    PS I do not own a tazer.

  • donfoo
    donfoo Member Posts: 1,771 Member
    donfoo said:

    I am confused, yes, more than usual

    "Magic Mouthwash" as I use the term is a compounded prescription of several drugs specified either by the phramacist or the prescribing doctor. AFAIK Amazon does not sell prescription drugs, so are we talking about different things?

     

    Also, maybe we are a short hop from Tokyo where a small cup of coffe is 25 bucks and a "coffin" hotel room runs a hundred bucks, but out here skipping rocks off the Pacfic 25 bucks for a compounded prescription seems really cheap. I mean the pharmacists actually has to mix something rather than count pills. Now if the PC want to bust my chops for that let's have a go. .o. lolll lol Lol LO LOL LOL. Ah, practicing my LOL skills.   lol

    I just post this given the comment is we are amonst some of the most elite when it comes to ringing the register at the pharmacy. I hear those little plastic bags dispensed by the clinic/hospital pharmacy can be THOUSANDS of $$$ each, so 25 bucks is like bandaids in comparison.

    btw - Matt is my new hero and mentor for the month of June. Congratsulations! 

    correction

    clarification new to me about Magic Mouthwash. I was under the impression that my MO was indicating what ne wanted in the MM, thus supportin the allusion that MM has many variants. It does but maybe for other reasons, steeped in MM lore and tradition.

    I spoke with my MO this morning and asked him to add lidocaine to my MM as I wanted something more soothing and the current MM stinks my tongue a bit. He proceeds to tell me he does NOT specify what goes in, he just selects one of the predefined formulations that are in their system. So, at least inh my case, the physician does NOT specify what goes into MM. And maybe the pharmacist also is then just following prescribing order and does not specify what goes in. so do ask how these formulas get designed and into the various pharma systems. too early for this. LOL

     

  • HelenBack
    HelenBack Member Posts: 87 Member
    donfoo said:

    correction

    clarification new to me about Magic Mouthwash. I was under the impression that my MO was indicating what ne wanted in the MM, thus supportin the allusion that MM has many variants. It does but maybe for other reasons, steeped in MM lore and tradition.

    I spoke with my MO this morning and asked him to add lidocaine to my MM as I wanted something more soothing and the current MM stinks my tongue a bit. He proceeds to tell me he does NOT specify what goes in, he just selects one of the predefined formulations that are in their system. So, at least inh my case, the physician does NOT specify what goes into MM. And maybe the pharmacist also is then just following prescribing order and does not specify what goes in. so do ask how these formulas get designed and into the various pharma systems. too early for this. LOL

     

    Our MM

    is made from lidocaine, benadryl, and mylanta I think one part each. I'm sure there's no harm in asking for a tad more lidocaine. We had another formula that was nystatin and benadryl in case my husband started developing thrush, but he never did.

     

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    fishmanpa said:

    Like Moonshine from the Hollar

    Each pharmacy has their own method for MM. The first batch I got was a swish and spit and the 2nd batch was from Johns Hopkins and they called it Larry's Solution which was swish and swallow. Both numbed my mouth and throat. Just don't try to take pills after using it as you can't feel them in your mouth! ~lol~ 

    Fortunately, as I heal, I need less and less. And you're right.. the stuff ain't cheap!

    "T"

    Larry's Solution #2

    I must have had an updated version, LOL... Mine was called Larry's Solution #2...

  • hwt
    hwt Member Posts: 2,328 Member
    HelenBack said:

    Our MM

    is made from lidocaine, benadryl, and mylanta I think one part each. I'm sure there's no harm in asking for a tad more lidocaine. We had another formula that was nystatin and benadryl in case my husband started developing thrush, but he never did.

     

     

    Costs

    Happy to say mine is the real deal including lidocaine filled at the cancer center pharmacy where I had my rads and chemo. When everyone started talking about how expensive it was, I was surprised. I know they do honor my pharmacy benefit that comes with my health insurance, Express Scripts.   The last time it was $25 and I thought it had been $20 in the past. Sounds like I should consider myself lucky even at $25.

  • donfoo
    donfoo Member Posts: 1,771 Member
    HelenBack said:

    Our MM

    is made from lidocaine, benadryl, and mylanta I think one part each. I'm sure there's no harm in asking for a tad more lidocaine. We had another formula that was nystatin and benadryl in case my husband started developing thrush, but he never did.

     

     

    keep us posted

    I would be VERY interested to hear how they handle a request to change the compounding formula. If they are accomdative of it, who can authorize such a change in formulation. My doctor apparently can not change the ingredients and I am sure can not change the formulation in any manner as he stated he just order stock unit 9489x2 or whatever, no options.

  • donfoo
    donfoo Member Posts: 1,771 Member
    hwt said:

    Costs

    Happy to say mine is the real deal including lidocaine filled at the cancer center pharmacy where I had my rads and chemo. When everyone started talking about how expensive it was, I was surprised. I know they do honor my pharmacy benefit that comes with my health insurance, Express Scripts.   The last time it was $25 and I thought it had been $20 in the past. Sounds like I should consider myself lucky even at $25.

    lucky - yes

    During one my pickups of MM, there was mess up on the prescription authoriztion and they said you can pay cash - like $85. I said NOTHANS. I can wait a day - go get the prescrsdiption authorized the proper way you ninkumpoops.

  • MICH4EL
    MICH4EL Member Posts: 73
    Magic mouthwash

    I have Magic Mouthwash but also have not used it very much.  It is not seem to help enough to make it worth experiencing the numbness.  I have the most trouble with either acidic or sugary foods.  For a while,  I could not handle fruit smoothies or anthing with ice cream.  The worst is over for me, but some things still hurst to swallow.

    I think it has as much to do with certain types of foods as it does with the effectiveness of the mouthwash for all foods.