I've got a "rough" spot starting on my lower lip....

phrannie51
phrannie51 Member Posts: 4,716
in Head and Neck Cancer #1
it isn't painful, but after Laralyn's thrush party, and then of course the normal stuff that can start in the mouth from rads and chemo, I'm paranoid.....is "rough" the beginning of something I should be watching...doing something about, before it becomes something else?

The Onc gave me a thing of MuGard to have on hand, saying that using it early in the game is better than trying to fix something already going....so I've been swishing a couple times a day with that, plus swishing with the soda/salt....

Signed...

Pararnoid p

Comments

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    #2
    It's Beginning
    Hi Phrannie,

    I still have rough spots all over the inside of my mouth. Feels kind of like sandpaper. Don't give it any concern, it's normal and will go away eventually.

    The Magic Mouthwash worked good for me to keep me from getting Thrush. I read the ingredients and it has an anti fungal medicine in it. I never got the MuGard so no comment on that one. Just keep talking to your doctor. You'll have lots of concerns as the treatment goes forward. Mostly just the usual symptoms. Have no fear, you have lots of friends here with answers. (not necessarily me!)

    My C was totally different from yours so let the others give their 411.

    Glad to see you finally getting the treatment. That means you'll be done in a few weeks.

    T
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #3
    tommyodavey said:

    It's Beginning
    Hi Phrannie,

    I still have rough spots all over the inside of my mouth. Feels kind of like sandpaper. Don't give it any concern, it's normal and will go away eventually.

    The Magic Mouthwash worked good for me to keep me from getting Thrush. I read the ingredients and it has an anti fungal medicine in it. I never got the MuGard so no comment on that one. Just keep talking to your doctor. You'll have lots of concerns as the treatment goes forward. Mostly just the usual symptoms. Have no fear, you have lots of friends here with answers. (not necessarily me!)

    My C was totally different from yours so let the others give their 411.

    Glad to see you finally getting the treatment. That means you'll be done in a few weeks.

    T

    H&N/mouth
    Sounds normal, Phrannie. Most of us take a hit to the gum tissue, long term, and the likes of mouth sores and changes to the gum surface are typical when rads applied to the mouth. Manageable. Had sores extend to the outside of my lips, and Aquaphor took care of them okay. Would advise, if you're still chewing food- be very careful with the chewing so as not to let the teeth cut into the gum tissue. And, going forward, the mouth tissue heals-up remarkably well. You will see your mouth change, somewhat, and the thing that fooled me was that I didn't realize a lot of what I was seeing was the result of swelling, so it took a few months after the end of tx before I could see the true state of things, which was all right. Keep in mind, Phrannie- you got the big C, and this is as big a fight as you have ever known. Roll with the punches, Phrannie, and keep your Drs in the Loop and the mind in the Positive. You're gonna be okay.

    Believe

    kcass
  • Laralyn
    Laralyn Member Posts: 532
    #4
    Kent Cass said:

    H&N/mouth
    Sounds normal, Phrannie. Most of us take a hit to the gum tissue, long term, and the likes of mouth sores and changes to the gum surface are typical when rads applied to the mouth. Manageable. Had sores extend to the outside of my lips, and Aquaphor took care of them okay. Would advise, if you're still chewing food- be very careful with the chewing so as not to let the teeth cut into the gum tissue. And, going forward, the mouth tissue heals-up remarkably well. You will see your mouth change, somewhat, and the thing that fooled me was that I didn't realize a lot of what I was seeing was the result of swelling, so it took a few months after the end of tx before I could see the true state of things, which was all right. Keep in mind, Phrannie- you got the big C, and this is as big a fight as you have ever known. Roll with the punches, Phrannie, and keep your Drs in the Loop and the mind in the Positive. You're gonna be okay.

    Believe

    kcass

    I felt those too!
    I thought they were oral mucositis trying to start (despite the MuGard) but it was actually the thrush. Can you see it in a mirror? Just keep watch for white spots, so you can catch it earlier than I did if it is thrush.

    The nurses at radiation where I go are always happy to check me out if I have any questions. Maybe ask one of them to take a look inside your mouth at your next treatment?
  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    Kent Cass said:

    H&N/mouth
    Sounds normal, Phrannie. Most of us take a hit to the gum tissue, long term, and the likes of mouth sores and changes to the gum surface are typical when rads applied to the mouth. Manageable. Had sores extend to the outside of my lips, and Aquaphor took care of them okay. Would advise, if you're still chewing food- be very careful with the chewing so as not to let the teeth cut into the gum tissue. And, going forward, the mouth tissue heals-up remarkably well. You will see your mouth change, somewhat, and the thing that fooled me was that I didn't realize a lot of what I was seeing was the result of swelling, so it took a few months after the end of tx before I could see the true state of things, which was all right. Keep in mind, Phrannie- you got the big C, and this is as big a fight as you have ever known. Roll with the punches, Phrannie, and keep your Drs in the Loop and the mind in the Positive. You're gonna be okay.

    Believe

    kcass

    Today we had an education class with
    the nurse practitioner at the radiation place ....what a great resource she is! I showed her my lip and it is just part of the deal since my mouth is getting dryer by the day. She gave me some freeby stuff...aloe..aquqphor...chap stick....calendula cream. Explained a lot of stuff I already learned being on here......best thing I learned is she is at my disposal......if I need anything stop or call....I haven't seen any of the Dr.' s since I started treatments....so it's a relief to know I can talk to someone face to face. Tho she'd like to scare me with the fad of side effects from getting fads to both sides of my neck....I already knew them...but one at a time...not the whole list at once...

    You are right Kent....this is a fight of a lifetime...tho my head hasn't wrapped around it even now....everyday getting the amofostine and rads.....yet by evening I must pretend it's not happening or something....give me a couple weeks and maybe by then cancer and phrannie will go together in a sentence ....

    P
  • LeoS2323
    LeoS2323 Member Posts: 160
    #6
    phrannie51 said:

    Today we had an education class with
    the nurse practitioner at the radiation place ....what a great resource she is! I showed her my lip and it is just part of the deal since my mouth is getting dryer by the day. She gave me some freeby stuff...aloe..aquqphor...chap stick....calendula cream. Explained a lot of stuff I already learned being on here......best thing I learned is she is at my disposal......if I need anything stop or call....I haven't seen any of the Dr.' s since I started treatments....so it's a relief to know I can talk to someone face to face. Tho she'd like to scare me with the fad of side effects from getting fads to both sides of my neck....I already knew them...but one at a time...not the whole list at once...

    You are right Kent....this is a fight of a lifetime...tho my head hasn't wrapped around it even now....everyday getting the amofostine and rads.....yet by evening I must pretend it's not happening or something....give me a couple weeks and maybe by then cancer and phrannie will go together in a sentence ....

    P

    P51
    Stick in there phrannie - I may reside thousands of miles away but I know for a fact that you are a remarkable lady who will win through.

    Personally I feel sorry for the cancer more than you, it picked the wrong person to mess with.

    All the best fellow newbie

    Leo
  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    LeoS2323 said:

    P51
    Stick in there phrannie - I may reside thousands of miles away but I know for a fact that you are a remarkable lady who will win through.

    Personally I feel sorry for the cancer more than you, it picked the wrong person to mess with.

    All the best fellow newbie

    Leo

    Thanks for cheer, Leo....
    I was talking to a old friend the other day on the phone. We have a long history together, as we were the only two survivors of a lifestyle lived 30+ years ago...truly, we were the only two out of a crowd of about 10, who got clean and sober, and have lived to tell the tale. He said "you were always a tough old bird"...(it was a compliment in his mind)...You lived thru 1st Street, cancer ain't got a chance with you".......I laughed, but at the same time, I realized I've been in and seen some tough stuff...that 1st St. wasn't for sissies......and I am tough on the inside.

    I'm so glad you're going along on this with me, you make a fantastic pom pom person :).

    p
  • LeoS2323
    LeoS2323 Member Posts: 160
    #8
    phrannie51 said:

    Thanks for cheer, Leo....
    I was talking to a old friend the other day on the phone. We have a long history together, as we were the only two survivors of a lifestyle lived 30+ years ago...truly, we were the only two out of a crowd of about 10, who got clean and sober, and have lived to tell the tale. He said "you were always a tough old bird"...(it was a compliment in his mind)...You lived thru 1st Street, cancer ain't got a chance with you".......I laughed, but at the same time, I realized I've been in and seen some tough stuff...that 1st St. wasn't for sissies......and I am tough on the inside.

    I'm so glad you're going along on this with me, you make a fantastic pom pom person :).

    p

    First Street
    Hey phrannie you sound like you must have some interesting stories to tell! Where was First Street?

    And I will keep the cheers coming...:-)

    All the best

    Leo
  • ooo
    ooo Member Posts: 105
    #9
    phrannie51 said:

    Thanks for cheer, Leo....
    I was talking to a old friend the other day on the phone. We have a long history together, as we were the only two survivors of a lifestyle lived 30+ years ago...truly, we were the only two out of a crowd of about 10, who got clean and sober, and have lived to tell the tale. He said "you were always a tough old bird"...(it was a compliment in his mind)...You lived thru 1st Street, cancer ain't got a chance with you".......I laughed, but at the same time, I realized I've been in and seen some tough stuff...that 1st St. wasn't for sissies......and I am tough on the inside.

    I'm so glad you're going along on this with me, you make a fantastic pom pom person :).

    p

    Just came home from rad #7
    Just came home from rad #7 (no chemo). I'm known in the building as the guy who bikes to get rads. Still doing fine. I just thought it's good to post some brighter news once in a while.

    The plan is to keep this up, survive cancer in my 30's and then survive 1st Street in my 60's.. :)

    Hugs to Phrannie, Leo, Laralyn, Dsexpress, Suzyhok and all the folks who are dancing with me right now.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
    LeoS2323 said:

    First Street
    Hey phrannie you sound like you must have some interesting stories to tell! Where was First Street?

    And I will keep the cheers coming...:-)

    All the best

    Leo

    LOL Leo and ooo.....
    1st St was skid row in Spokane, Wa. back in the early 80's...a true underbelly of life, and not a place I'd want to try and do now in my 60's. (tho, if you're a writer at heart, there's a story everyday down there, ooo...you could be the next Jack Kuroac). I've been told for years I should write a book, but alas........no talent for writing :(.

    Today is Friday.......no amifostine.......no rads.......for two whole days........YEAH!!!

    p

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