First Mouth Soars

Steve5
Steve5 Member Posts: 147
in Head and Neck Cancer #1

Just into 10th rad and past 2nd chemo and a mouth sore has appeared - yep the nurse said from the rads, yep the rad/onco said from the rads - I am swishing salt water and baking soda vociferously many many many times per day - according to them and the onco it will just get worse - I have read the magic mouth and mugard posts - any other advice - salt and baking soda yummy - also did anyone find water beginning to taste different - my 9 year old swears water does not have a taste, I begged to differ with him -

Thanks

Steve

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    condition normal

    Steve,

    Many H&N members describe water as flat, sweaty, salty or metallic, to name a few.

    I rinsed with salt, soda and water mixture all the time and used the magic mouth wash for mouth, tongue and throat discomfort.

    While you have entered the (possible) challenging part of treatments you are also just about half way there.  Hang tight, keep drinking (funky) water and keep your team apprised of all changes.

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
    steve, normally your son

    steve, normally your son would be right but when taking rad, all things change.  you are right, water now has a taste and it isn't a good one.  it will get better later on, until then hang in there and keep swallowing.  good luck thru the rest of tx.  I will be praying for completion without any extra bumps in the road.

    God bless,

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Matt....you forgot

    "salty swamp" taste. Laughing  I remember getting up one morning in the second week, and water tasting fine....by afternoon it tasted "weird" and by nightfall it was a salty swamp....but I kept drinking it.

    Once mouth sore attacked, tho.....even water was painful to get down.  I started sipping on L-glutamine powder mixed with water and it did not sting....tho I had to take it from a styro-foam cup, because all my mouth sores went directly to my lips.  If you don't have Mugard, then maybe uping the amount of salt in your soda/salt rinse might help.

    p

  • donfoo
    donfoo Member Posts: 1,773 Member
    #5
    yep

    Hi Steve,

    I discovered high pH alkaline water late in my game but it gave a different more soothing taste. Not sure it is the electrolytes but grab a bottle of Essentia or similar water, it is clearly marked. Can't hurt. Don

  • PJ47
    PJ47 Member Posts: 376
    #6
    If you can get to a dentist who has a laser do it ASAP

    I suffered with an entire mouth/throat full of ulcers until my dentist asked me to try out his laser (low level red spectrum). I was skeptical but desperate.  

    By that evening I could eat soft scrambled eggs.  The next day I could talk and swallow better and tolerate water, smoothies etc and the ulcers looked great!

     It cleans them and speeds up the healing and best of all numbs the nerve endings (my tongue was so painful and it eased the pain the first day}.

     I do not know why Rad/onc do not seem to know about this or recommend it.   it is fast (5 min) and inexpensive (my dentist did it for free).  All the Muguard($250 a bottle) in the world won't do what the laser does.  Please try it and let others know how you do.

    This does not have to be a normal expected painful side effect any longer folks!   

    PJ

  • Steve5
    Steve5 Member Posts: 147
    #7
    PJ47 said:

    If you can get to a dentist who has a laser do it ASAP

    I suffered with an entire mouth/throat full of ulcers until my dentist asked me to try out his laser (low level red spectrum). I was skeptical but desperate.  

    By that evening I could eat soft scrambled eggs.  The next day I could talk and swallow better and tolerate water, smoothies etc and the ulcers looked great!

     It cleans them and speeds up the healing and best of all numbs the nerve endings (my tongue was so painful and it eased the pain the first day}.

     I do not know why Rad/onc do not seem to know about this or recommend it.   it is fast (5 min) and inexpensive (my dentist did it for free).  All the Muguard($250 a bottle) in the world won't do what the laser does.  Please try it and let others know how you do.

    This does not have to be a normal expected painful side effect any longer folks!   

    PJ

    laser and other helps

    PJ thanks, I am going to look into this tomorrow when I go for treatment, the oral dentist inthe group is located on site, also thanks to everyone else here, I am using all your advice, one question - today I rinsed and took in alot of fluids by IV during the chemo treatment, and I had a chick fil eh milkshake and my sores feel better = rinses and liquids and milk shakes, can this also be a source of help to mouth sores,

     

    Okay, thanks everyone for the help, like i said I am looking at all of your suggestions = a great bunch

    all the best

     

    Steve

  • Steve5
    Steve5 Member Posts: 147
    #8
    donfoo said:

    yep

    Hi Steve,

    I discovered high pH alkaline water late in my game but it gave a different more soothing taste. Not sure it is the electrolytes but grab a bottle of Essentia or similar water, it is clearly marked. Can't hurt. Don

    Don steroid and essentia

    Hi Don, thanks so much again along with all the others here not named for help - was wonddering - during chemo I am also given a liquid steroid - was wondering if this adds temporary healing or less hurt from mouth sores for a day or so after - seems like they might being an anti inflamatory - also the essential has some anti oxidants - sort of supposed to stay away from those so as to not lessen the effect of the radiation - was thinking about blending up some mango and mixing with water to add a flavor, like blueberries or strawberries as well - homemade not store bought since artificially added sugar would be in those drinks - what do you think - I am thinking as long as i can drink the "swamp water" with a natural flavor should be okay - by the way Phrannie and Matt were right on especially the swamp water - my trusty water bottle with straw that was my friend turned swampy on me - also I am soy milk drinker for some time - one of my kids developed an adversity to regular milk some time ago and we started rice and soy milk and settled on soy - it still has a strong taste so I put that in smoothies with fruit - okay sorry about so long a message -

    11 rads down, 24 to go, 3 chemos down and 3-4 to go - nodes are getting smaller - I fall asleep under mask now (use valium still and rad tech talks me through stages) staying even keeled and letting my better half be happy for all little gains - will celebrate April 16 if all goes NED after PET/CT

    Thanks all for letting me lean - and for listening, really helps - special thought and prayers for all and for Jamie - keep going my brother -

     

     

    Steve

  • PJ47
    PJ47 Member Posts: 376
    #9
    Steve5 said:

    laser and other helps

    PJ thanks, I am going to look into this tomorrow when I go for treatment, the oral dentist inthe group is located on site, also thanks to everyone else here, I am using all your advice, one question - today I rinsed and took in alot of fluids by IV during the chemo treatment, and I had a chick fil eh milkshake and my sores feel better = rinses and liquids and milk shakes, can this also be a source of help to mouth sores,

     

    Okay, thanks everyone for the help, like i said I am looking at all of your suggestions = a great bunch

    all the best

     

    Steve

    Hope the dentist in your group will provide the laser

    I am certain that you do not have to suffer with these sores and accept them as "normal".  Go for it!

    PJ

  • Steve5
    Steve5 Member Posts: 147
    #10
    donfoo said:

    yep

    Hi Steve,

    I discovered high pH alkaline water late in my game but it gave a different more soothing taste. Not sure it is the electrolytes but grab a bottle of Essentia or similar water, it is clearly marked. Can't hurt. Don

    Quick reply essentia

    My son picked some up for me - tastes great, less filling- drinking - thanks

    Steve

  • spector551
    spector551 Member Posts: 109
    #11
    Steve

     I have been drinking smart water since the beginning - it seems to work pretty well. I am interested in trying the Essentia though.

     

    God bless,

    Jamie 

  • Steve5
    Steve5 Member Posts: 147
    #12
    spector551 said:

    Steve

     I have been drinking smart water since the beginning - it seems to work pretty well. I am interested in trying the Essentia though.

     

    God bless,

    Jamie 

    Heh big guy

    Hey - like Don said it has a 9.5 pH since yesterday I downed 50 oz or 1.5 liters - I am on the second bottle  - the first I took in yesterday evening and finished this AM - right now eating chicken noodle soup - put some garlic powder in, can taste it, but I am not going to put so much in next time :)   so thanks to Don I am drinking water with a different flavor, the one I have is just the essentia + - it claims it has Hydrogen antioxidants - of course not what I want since oxygen enhances the radiation effect - but I am going to aks my team about it - I am going to try and mix it with some mango fresh squeezed mangos - yesterday was chemo today nothing really tastes good except I can still taste eggs and for some reason some soups - I am gargling and swishing alot with salt and baking soda mix it helps - the steroid from the chemo treatment helped as well, but the soreness is back a little now - still just flushing my PEG - I have drank Smart Water before and love it - especially in the tall bottles a nice change from the norm - I also had hot chocolate made with milk and whip cream this morning - okay sorry to tell you all the good stuff I can still have when you cannot but if you have not tried these maybe you can - like I said crab meet and especially shrimp was really good - well not today but a little later this week will taste good, not sure if you can make a bisque or something out of sea food that might have a taste - and stay down - in small amounts and maybe like Don said add some sprinkle of ginger - the other thing that is working for me is sauteed fresh vegetables with onions and mushrooms - for some reason they have a taste -

    Okay - keep going, I heard a fantatstic story from a wife of a patient yesterday - how he is doing so well having something much worse - such a good story and such good positive thoughts and the miracle that is  -

    In my thoughts and prayers Jamie

    Steve

     

     

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