coating throughout the inside of mouth and tongue
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coating throughout the inside of mouth and tongue

› Forums › General Melanoma Community › coating throughout the inside of mouth and tongue

  • Post
    • November 25, 2018 at 1:16 am
    coleandtom@gmail.com
    Participant

     and my name is Cole and I have never posted here before but I am grateful for this forum as it is help me so much since my diagnosis on June 2018 .  I am currently stage for melanoma with cancer in my lymph nodes that is being treated right now with a combination of nivo and Ipi.  my main side effect is fatigue and a horrible coding and threw out my mouth that makes it almost impossible to enjoy food .  I hate to keep bothering my doctor and was just wondering if anyone else had this and how they dealt with it thank you all 

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      • November 25, 2018 at 2:41 am
      jennunicorn
      Participant

      Sounds like it could be oral thrush. It's a yeast infection in the mouth and not something I dealt with but I have seen others mention they've gotten it while on treatment before. Definitely let your oncologist know. You are not bothering them, you are being a good patient by letting them know any and all side effects. Side effects can't be treated properly or timely if you don't let your team know. They can prescribe a special mouthwash to help with that. 

        • November 25, 2018 at 7:40 am
        MarkR
        Participant

        I suffered with oral thrush as part of my Ipi/Nivo treatment as well as a very dry mouth.  For the oral thrush I was given a mouth wash that cleared it up in about a week.  For the dry mouth I just had a glass of water with any dry food although I was offered artificial saliva but passed on that one!!

      • November 25, 2018 at 4:37 pm
      MelanomaMike
      Participant

      Hi Cole, im Mike and thanx for posting, your right on schedule with the "various" side effects that "any" Immunal Drugs will cause {ipi, nivo, pembro etc} i to went through weeks apon weeks of "dry" mouth, filmy tongue etc. and no matter how much water or gatorade i consumed, it never helped! i mean, the best way to discribe it was, it was like a rabbit was constantly taking a nap in my mouth…Like all have said, if it bugs you to much, "bug" your Oncologist, he/she will refer you {most likely} to an Endocrinologist, they are hip to most your "Glands" {Salivary glands etc.}…Be well!

        • November 27, 2018 at 2:48 am
        lkb
        Participant

        Mike, how long did the rabbit stay in your mouth? Mine hs been around for a couple of months and I hope there's only one in there.

      • November 26, 2018 at 3:26 am
      Ridingaroundwith27Jennifers
      Participant

      Hi Cole,

      You aren't bugging your DR.  Please never feel that way.  He/She wants to hear from you about everything.  Mine actually told me to become a "complainer".  She said it would help her treat me more effectively.  It is not my nature.  My nature is to say "I'm fine, or I'm OK".  Call them and talk with them and let them help you.  They want to know.  They don't see you as a bother so don't think that you are.  I hope you feel better soon. 

      Good wishes to you

      Jennifer

      • November 30, 2018 at 4:15 am
      lkb
      Participant

      Cole, I've had dry mouth since my third Nivo infusion. After fifth infusion, it got much worse, plus sore white dots on the tongue. When my whole mouth developed a white coating, I started Nystatin, a mouth swish that is definitely helping. Four times a day, tastes like Fruit Loops. Usual treatment is a week. Hope you told your doc and got some relief. Keep us posted.

      • December 3, 2018 at 3:28 pm
      Hukill
      Participant

      While on the combo I went 11 weeks with no salava. I had to carry water and water baking soda mix with me everywhere. Always had to rinse my mouth and drink water to keep from choking. I tried every over the counter product and even old wives tells like pebbles in my mouth. Nothing worked, was prescribed artifical salava, didn't work It finnaly went away, it was the fall of 2016 and my taste buds were meseed up as well. Now my salava all of a sudden will get very thick 4 or 5 times a week and goes away as fast as it appears. I had 5 combo doses and many of my side effects started then. During 52 doses of just nivo I had no new side effects but the ones that started on the combo I still have today. 

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