Mucositis

Oscar1
Oscar1 Member Posts: 5
edited December 2014 in Head and Neck Cancer #1

Am new here have been treated for tonsil cancer. Am 6 weeks out from radiation having trouble with mucositis and swelling. Is there any possible recovery time for this as having trouble getting nutriction in. Was given meds from ENT but has not subsided. Also have radiation burns on inside of mouth. any idea on the length of healing from them

appreciate anyone's help on this subject.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    you are on H&N time

    Oscar1,

    Welcome to the H&N forum, I am glad you are finished with treatments and are learning the recovery process is slow.

    For mucus some have luck with musinex and rinsing and swishing with the baking soda and saltwater solution.

    If the swelling is edema there are some (safe) and recommended massages for that.

    The healing is going on right now, it is just slow.  If you keep your eyes open, little improvements can be seen.

    Best,

    Matt

  • lornal
    lornal Member Posts: 428
    #3
    CivilMatt said:

    you are on H&N time

    Oscar1,

    Welcome to the H&N forum, I am glad you are finished with treatments and are learning the recovery process is slow.

    For mucus some have luck with musinex and rinsing and swishing with the baking soda and saltwater solution.

    If the swelling is edema there are some (safe) and recommended massages for that.

    The healing is going on right now, it is just slow.  If you keep your eyes open, little improvements can be seen.

    Best,

    Matt

    sal****er

    Matt  are you cursing again?  What is this supposed to be?

    Lorna

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Hi Oscar and welcome to this little

    oasis in the desert of oral cancer.  As Matt said, healing is a slow process....at 6 weeks out you should be turning a corner in the very near future.

    For the Mucositis, I used L-Glutamine powder mixed with water and the salt/soda mix....as these were the only things I could put into my mouth that didn't sting.  You can drink L-Glutamine....the salt/soda is a rinse and spit.  There is also a chance you have thrush on top of the mucositis, making your mouth sorer than just healing from treatment.  Because I couldn't stand anything in my mouth, I used Diflucon for that, rather than Nystatin....heals thrush from the inside out.  They gave me the liquid form and I poured it down my tube.  I have also cured light cases of thrush with Primadopholis Bifidus...it's a probiotic I picked up at the health food store...open the cap an pour it on my tougue....add a little water and swish for 3 or 4 minutes....do this 3 or 4 times a day.  It's good stuff.

    p 

  • Sailor123
    Sailor123 Member Posts: 97
    #5
    Oh Oscar…….

    Congratulations on finishing treatment.  Your still fresh out of the trenches.  I am seven and a half months out of treatment and can tell you its been a very slow recovery that is anything but linear.  It does get better, but ever slowly.  My mouth is still burned and though I can now eat most things the reminders remain inside my mouth.  Its dry, tender and different then before.  That said, its dramatically better than it was early on.  It will get better but for me it would get worse and better, worse and better, worse and better.  Finally now, i'm doing sooooo much better and life is almost normal again.  Stay hydrated, nourished and rested is all I can say.  It will all come around its just a slow process.  There is light at the end of the tunnel and I can honestly say in the last two months I have been happy, energetic, back to work and grateful to have come out the other side of this journey.  Hang in there.

    S

  • Oscar1
    Oscar1 Member Posts: 5
    #6
    Sailor123 said:

    Oh Oscar…….

    Congratulations on finishing treatment.  Your still fresh out of the trenches.  I am seven and a half months out of treatment and can tell you its been a very slow recovery that is anything but linear.  It does get better, but ever slowly.  My mouth is still burned and though I can now eat most things the reminders remain inside my mouth.  Its dry, tender and different then before.  That said, its dramatically better than it was early on.  It will get better but for me it would get worse and better, worse and better, worse and better.  Finally now, i'm doing sooooo much better and life is almost normal again.  Stay hydrated, nourished and rested is all I can say.  It will all come around its just a slow process.  There is light at the end of the tunnel and I can honestly say in the last two months I have been happy, energetic, back to work and grateful to have come out the other side of this journey.  Hang in there.

    S

    Mucositis

    Thanks for your reply very much appreciated. You mentioned you are still burned As I am. Do you take any meds to eat.

    and if so what is it so I might be able to drink these proteen drinks better. As I do not have a tube to pour anything down.

    and eatting solids is definitely out of question right now.

    Again any thing you can add is helpful. Glad you are recovering and life is getting better for you.

  • Oscar1
    Oscar1 Member Posts: 5
    #7
    phrannie51 said:

    Hi Oscar and welcome to this little

    oasis in the desert of oral cancer.  As Matt said, healing is a slow process....at 6 weeks out you should be turning a corner in the very near future.

    For the Mucositis, I used L-Glutamine powder mixed with water and the salt/soda mix....as these were the only things I could put into my mouth that didn't sting.  You can drink L-Glutamine....the salt/soda is a rinse and spit.  There is also a chance you have thrush on top of the mucositis, making your mouth sorer than just healing from treatment.  Because I couldn't stand anything in my mouth, I used Diflucon for that, rather than Nystatin....heals thrush from the inside out.  They gave me the liquid form and I poured it down my tube.  I have also cured light cases of thrush with Primadopholis Bifidus...it's a probiotic I picked up at the health food store...open the cap an pour it on my tougue....add a little water and swish for 3 or 4 minutes....do this 3 or 4 times a day.  It's good stuff.

    p 

    Mucositis

    As you guys can see I am new here. Want to thank all for your replies as I am a little lost here.

    did not know could reply to all. 

    Lord bless all of you for answering am worried, confused, and doctors just say keep swolowing liquids. Easier said than done through this pain. Is Diflucon a prescription because everything burns except salt and soda mixture. Was given Nystatin and burned for at least ten minutes as I was crazy the entire time. And you are correct there was some thrush. L- Glutamine is that a prescription also? If so who should have knowledge of these meds. Evidently my ENT does not. 

    If you can continue to help me get through problem I am having appreciated. I know it's probably hard to relive some of this but I could use the direction.

    thank you so much P.

  • Oscar1
    Oscar1 Member Posts: 5
    #8
    Frustrating

    i replied to everyone who was generous to reply to me and put under same title. Went back to check and can't find anyone . No p where did you go I can't figure how to communicate on this site. No s need help

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    Oscar1 said:

    Mucositis

    As you guys can see I am new here. Want to thank all for your replies as I am a little lost here.

    did not know could reply to all. 

    Lord bless all of you for answering am worried, confused, and doctors just say keep swolowing liquids. Easier said than done through this pain. Is Diflucon a prescription because everything burns except salt and soda mixture. Was given Nystatin and burned for at least ten minutes as I was crazy the entire time. And you are correct there was some thrush. L- Glutamine is that a prescription also? If so who should have knowledge of these meds. Evidently my ENT does not. 

    If you can continue to help me get through problem I am having appreciated. I know it's probably hard to relive some of this but I could use the direction.

    thank you so much P.

    Diflucon (Florinazole)....can come in

    liquid or pill form and it is a prescription.  Nystatin is a wash to clear thrush from the outside in....Diflucon cures it from the inside out...either taking it in pill form or liquid....I had much better luck with it than the Nystatin.  L-Glutamine you can get at the health food store....get the powder so you can mix it with water and it's good for digestion as well as for the mouth sores (doesn't help thrush, tho)....

    REALLY....when you're at the health food store pick up some of that probiotic....I was amazed how much it helped clearing the thrush out of my mouth....Thrush is an overload of yeast in the mucous membranes.....probiotics add the "good" bugs to balance it out....

    p

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