So apparently it's not thrush, I 'm confused

meaganb
meaganb Member Posts: 244 Member
in Head and Neck Cancer #1
My tongue turned white on Saturday and became very tender, it feels like I have sandpaper in my mouth. I called the on call Dr on Sunday and he said I probably had thrush. He called in some liquid nystatin for me. Nothing about the appearance of my tongue has changed since then. I met with my RO this morning and he said it didn't look like thrush, that it was a normal reaction to the radiation. He prescribed Magic Mouthwash ( which is not very magical btw). Is this normal for others on here? Do I need to expect for my tongue to look and feel like this for the next few weeks?

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Maybe
    you can get quite a surface reaction to rads. My lips did that, including peeling over and over again. I was getting some rads from the front, as evidenced by the fact that my mustache quit growing. So I'd have to say that's possible, and you may just have to ride it out. Does it actually hurt? My lips did, although when I had thrush, the mouth pain was quite a bit worse.

    Pat
  • meaganb
    meaganb Member Posts: 244 Member
    #3
    longtermsurvivor said:

    Maybe
    you can get quite a surface reaction to rads. My lips did that, including peeling over and over again. I was getting some rads from the front, as evidenced by the fact that my mustache quit growing. So I'd have to say that's possible, and you may just have to ride it out. Does it actually hurt? My lips did, although when I had thrush, the mouth pain was quite a bit worse.

    Pat

    It does hurt but can be
    It does hurt but can be managed with extra strength Tylenol. I just did some quick reading and saw that it's pretty common for Rads to cause the taste buds to die and then they can sloth off. I lost my sense of taste at some point last week.....this sucks!!
  • Ingrid K
    Ingrid K Member Posts: 813
    #4
    meaganb said:

    It does hurt but can be
    It does hurt but can be managed with extra strength Tylenol. I just did some quick reading and saw that it's pretty common for Rads to cause the taste buds to die and then they can sloth off. I lost my sense of taste at some point last week.....this sucks!!

    it's a temporary thing
    Hi Meagan...that sounds like a plausible explanation. the taste buds get fried during rads, but the good news --even with a compromised tongue (I lost 75% of mine), the taste buds (on the remaining 25% of original tongue) do come back !! I am living proof of that ! you will slowly start to taste again...usually salty taste is the first to come back and it comes back with a vengence....where even water may taste salty for a while. But once you can taste salt again the others, sweet, savory will be right behind. KEEP YOUR HEAD UP and continue the good fight. You are doing so well. Stay strong.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #5
    Ingrid K said:

    it's a temporary thing
    Hi Meagan...that sounds like a plausible explanation. the taste buds get fried during rads, but the good news --even with a compromised tongue (I lost 75% of mine), the taste buds (on the remaining 25% of original tongue) do come back !! I am living proof of that ! you will slowly start to taste again...usually salty taste is the first to come back and it comes back with a vengence....where even water may taste salty for a while. But once you can taste salt again the others, sweet, savory will be right behind. KEEP YOUR HEAD UP and continue the good fight. You are doing so well. Stay strong.

    Sort of normal
    Hi Meagan,

    My tongue turned an off white and then a brownish color that I realized later that it was from my morning coffee.

    I took a toothbrush and got as much off as I could w/o hurting myself too much. It has to do with not having enough saliva to do the job, at least with me I think that was the reason. My tongue also started getting several deep cracks right down the middle which keeps me from enjoying anything spicy or salty. It's like an open sore but it looks okay.

    And yes, the old taste buds are one of the first things to go. I've read so many different stories of how water tastes, and food like cardboard, etc. Luckily I never got the metallic taste but it sure doesn't make eating or drinking enjoyable. That is if you can get the stuff down.

    Your taste buds will come back. When, no one can say. It could take up to two years and some get them back in a few weeks. Me, mine came back a month after rads, but not completely.

    It will all pass, just stay positive and know that one day it will be over.

    T
  • Sam999
    Sam999 Member Posts: 319 Member
    #6
    tommyodavey said:

    Sort of normal
    Hi Meagan,

    My tongue turned an off white and then a brownish color that I realized later that it was from my morning coffee.

    I took a toothbrush and got as much off as I could w/o hurting myself too much. It has to do with not having enough saliva to do the job, at least with me I think that was the reason. My tongue also started getting several deep cracks right down the middle which keeps me from enjoying anything spicy or salty. It's like an open sore but it looks okay.

    And yes, the old taste buds are one of the first things to go. I've read so many different stories of how water tastes, and food like cardboard, etc. Luckily I never got the metallic taste but it sure doesn't make eating or drinking enjoyable. That is if you can get the stuff down.

    Your taste buds will come back. When, no one can say. It could take up to two years and some get them back in a few weeks. Me, mine came back a month after rads, but not completely.

    It will all pass, just stay positive and know that one day it will be over.

    T

    Hi Meagan,
    Did you try pro
    Hi Meagan,

    Did you try pro biotics ? When i had tongue surgery my toungue got white and it cleared up after taking pro biotics.

    Sam
  • meaganb
    meaganb Member Posts: 244 Member
    #7
    Sam999 said:

    Hi Meagan,
    Did you try pro
    Hi Meagan,

    Did you try pro biotics ? When i had tongue surgery my toungue got white and it cleared up after taking pro biotics.

    Sam

    I have been eating yogurt
    I have been eating yogurt with live cultures but haven't specifically been taking probiotics. I think those are supposed to be more effective with thrush which apparently I don't have but I guess it couldn't hurt to try, right?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    Sam999 said:

    Hi Meagan,
    Did you try pro
    Hi Meagan,

    Did you try pro biotics ? When i had tongue surgery my toungue got white and it cleared up after taking pro biotics.

    Sam

    you know
    Greg53 swears by that also. Heres my take on it: cant hurt. Prolly worth a try.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #9
    longtermsurvivor said:

    you know
    Greg53 swears by that also. Heres my take on it: cant hurt. Prolly worth a try.

    Meagan
    Sounds typical, and nothing to be overly alarmed about. MM for me, and Nystatin for the Thrush prevention, sipping water for the swallowing, and ice chips for the relief they provide. We all feel what the rads do to us, and it is definitely not pleasant, but in the big picture- you want those rads, and the damage they do, because those rads are what kills the C the best. And don't worry- you will be amazed by how well the mouth and tongue heals in the months post-tx, though with some it takes longer than with others.

    I had a PEG, so cannot advise on what's best for eating and drinking the traditional way during tx.

    kcass
  • Sam999
    Sam999 Member Posts: 319 Member
    #10
    meaganb said:

    I have been eating yogurt
    I have been eating yogurt with live cultures but haven't specifically been taking probiotics. I think those are supposed to be more effective with thrush which apparently I don't have but I guess it couldn't hurt to try, right?

    Does not hurt to give it a
    Does not hurt to give it a try. You will know if it works or not in 3 days. Buy the one from health food store which are kept in refrigerator.

    I am starting my radiation today and so do not have exp with it during radiation but definately helped me after my tongue surgery. I use something call "raw probiotics for women".

    Sam
  • Kperry
    Kperry Member Posts: 7
    #11
    All part of it
    Hi Meagan I too had this and they treated it as a fungal infection with a pill fluconazole and also followed with 2 wks of antibiotics just incase there was a bacterial infection going on. Doing the salt soda rinse helps. I would also use a little peroxide in it. I'm close to being 3 wks out from my last radiation and my tongue is just now starting to clear up. It's a back and fourth thing tho it looks good one day and the next it's like it started all ove r again. Hope some of this help Good luck! You are in my prayers.
  • Laralyn
    Laralyn Member Posts: 532
    #12
    Kperry said:

    All part of it
    Hi Meagan I too had this and they treated it as a fungal infection with a pill fluconazole and also followed with 2 wks of antibiotics just incase there was a bacterial infection going on. Doing the salt soda rinse helps. I would also use a little peroxide in it. I'm close to being 3 wks out from my last radiation and my tongue is just now starting to clear up. It's a back and fourth thing tho it looks good one day and the next it's like it started all ove r again. Hope some of this help Good luck! You are in my prayers.

    I have the white, tingling tongue too
    And I also had the double thrush party. It's not clear for me whether the tongue effect now is from the radiation or from lingering thrush. I'm on daily diflucan and oral Nystatin, but I just started the Nystatin recently. I'll post in a couple days if it makes a difference for the tingling or color.

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