Side affects

jackflash22
jackflash22 Member Posts: 524 Member
in Head and Neck Cancer #1

Side affects already 4th rad. My skin is sloughing off my tongue and inside cheeks, my neck looks like a chipmunk one side and my teeth feel coated. the mask had to be loosened a bit this morning to allow for the swelling. Tomorrow I have the op for PEG, and dental assessment, and rad. I can't eat or drink for 6 hours prior so my mouth will be so dry, what can I do to keep my mouth from drying out. The skin coming off cheek sides and tongue I hadn,t heard of in the forum has anyone had that.

Comments

  • robswife87
    robswife87 Member Posts: 209
    #2
    Sorry it is hitting already

    Rob had skin sloughing off the inside of cheeks and burn lesions on his tongue but it didn't start til the 2nd week. Did they give you Magic Mouthwash or Mugard. Try baking soda, salt and water rinses sll throughout the day.

    Praying it does not get a whole lot worse.

    Sandy

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #3
    robswife87 said:

    Sorry it is hitting already

    Rob had skin sloughing off the inside of cheeks and burn lesions on his tongue but it didn't start til the 2nd week. Did they give you Magic Mouthwash or Mugard. Try baking soda, salt and water rinses sll throughout the day.

    Praying it does not get a whole lot worse.

    Sandy

    Magic mouthwash

    I don't know if I can get them here in the UK. I will do the mouth wash is baking soda bicarbonate of soda?

  • robswife87
    robswife87 Member Posts: 209
    #4
    jackflash22 said:

    Magic mouthwash

    I don't know if I can get them here in the UK. I will do the mouth wash is baking soda bicarbonate of soda?

    yes

    yes it is

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #5
    jackflash22 said:

    Magic mouthwash

    I don't know if I can get them here in the UK. I will do the mouth wash is baking soda bicarbonate of soda?

    That was fast!

    JackF,

    Sorry it's hitting you so fast. Yeah... ask your docs about Magic Mouthwash. It's essencially a lidocaine mixture you swish and spit. Some formulas you can swallow. I liked the swallow type personally. The baking soda and salt mixture really helped. I added 5g of glutamine as well. Swish/gargle that every 2-3 hours. The formula I used was 16oz water, 1tablesppon of baking soda, 1 tablespoon of kosher salt and 5g glutamine. 

    Positive thoughts and prayers

    "T"

  • robswife87
    robswife87 Member Posts: 209
    #6
    fishmanpa said:

    That was fast!

    JackF,

    Sorry it's hitting you so fast. Yeah... ask your docs about Magic Mouthwash. It's essencially a lidocaine mixture you swish and spit. Some formulas you can swallow. I liked the swallow type personally. The baking soda and salt mixture really helped. I added 5g of glutamine as well. Swish/gargle that every 2-3 hours. The formula I used was 16oz water, 1tablesppon of baking soda, 1 tablespoon of kosher salt and 5g glutamine. 

    Positive thoughts and prayers

    "T"

    Thanks T

    forgot about the glutamine. I couldn't find the powder locally but bought the tablets and crushed them up and put

    Sandy

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Wow....you got the effects quick...

    To keep your mouth dampened in the 6 hours before they put your PEG in, use ice chips, or a clean wet sponge (like pick a new one)....you aren't going to get enough water in your tum via ice chips or sponge to make any difference for a PEG.

    Ask about Magic Mouthwash....they might call it something different in the UK, but I'm sure they have it.  It is a combo of lidocaine, pepto bismal, and nystatin....they whip it up in the drug store.  Also, ask the Rad doc about Mugard....Don't know if they have that in the Uk, but it's worth a try.  It has to be started early in radiation treatment or it can't keep up with the tissue sloughing off.  I kept a one liter bottle of the salt/soda mixture on my counter, and swished and spit many many times a day....it does help.  I used the L-glutamine powder mixed with water to get some type of liquid down my gullet when everything else brought misery to my mouth...but that was after rads were over, and the 5FU was terrorizing my lips.

    Are you using anything for the outside skin for the rads?  Any lotions or potions to help your neck and face during radiation?

    p 

  • donfoo
    donfoo Member Posts: 1,773 Member
    #8
    sorry

    Jackie,

    Sorry to hear about the early start, you usually get a 10 day reprieve. How about a Biotine dry mouth product to keep your mouth moist? Magic Mouthwash is a common non-medical phrase used to label a multi compound liquid. They are often different compounds but many have lidocaine (short term local anesthetic), Benydryl, nystatin, etc. Basically, it offers pain relief to the mouth/throat.

    Since you are the front line now - remember - HYDRATION - NUTRUTION - PAIN MANAGEMENT. That is all there is to it and you will make it fine. 

    don

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #9
    robswife87 said:

    Thanks T

    forgot about the glutamine. I couldn't find the powder locally but bought the tablets and crushed them up and put

    Sandy

    Powdered G

    You can get the powdered glutamine through health/vitamin supplement sites. It's inexpensive. 

    "T"

  • denistd
    denistd Member Posts: 597
    #10
    donfoo said:

    sorry

    Jackie,

    Sorry to hear about the early start, you usually get a 10 day reprieve. How about a Biotine dry mouth product to keep your mouth moist? Magic Mouthwash is a common non-medical phrase used to label a multi compound liquid. They are often different compounds but many have lidocaine (short term local anesthetic), Benydryl, nystatin, etc. Basically, it offers pain relief to the mouth/throat.

    Since you are the front line now - remember - HYDRATION - NUTRUTION - PAIN MANAGEMENT. That is all there is to it and you will make it fine. 

    don

    Side effects

    HI Jackie, I am a Brit living in the US and had 35 radio sessions and cisplatin chemo. Cancer patients in the UK have a much heralded system for nursing care, I wish we had something like that here. Are you under the watchful eye of the McMillan people, they are a true Godsend. My niece in Scotland just went through gruelling surgery radio and chemo for breast cancer, McMillan nurses came to her home every other day, they put handlebars in her toilet and did cleaning etc. They also took care of all her medication needs. I am sure you know this and yes you can get magic mouthwash there as well as other concoctions, just ask. Denis

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #11
    So sorry

    to hear they are hitting you already!  The side effects started on me after my SECOND day of rads, so I started early too.  They told me nothing to eat or drink before my PEG insertion, but when I got there, they gave me a bottle of water to sip on while I waited to get my IV.  Being hydrated helped them find a vein better.  They told me it was mainly food that needed to be avoided before the procedure. Best of luck to you and I hope things improve! 

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