Taste and Saliva back

phillyboy
phillyboy Member Posts: 23 Member
in Head and Neck Cancer #1

Cancer survivors. Had surgery March 2017. Radiation 45 days and 2 doses chemo shortly after. Golf ball size,stage 4 tumor was removed from my neck. Lost all of my saliva and taste. Dry mouth effects were tough to bear Now 2 1/2 years later I have just gotten about 50% taste and saliva back. I pray that this this is permanent. Other side effects  such as hearing and nerve damage are still here. What a great feeling to taste,over eat and minimize my need for Xylamelts. Tough to avoid giving up but in my case I didn't. Others who are suffering don't ever give up. Anything is possible at any time. God bless.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,468 Member
    #2
    Congratulations phillyboy

    I am so glad for you. Every improvement like this is a great blessing. I have read different times on here people have some things come back some not and sometimes quickly and sometimes years later the main thing is we like to have it back sooner or later. Take Care-God Bless

  • ERomanO
    ERomanO Member Posts: 323 Member
    #3
    That's the spirit!

    I'm glad you're feeling better, phillyboy!

    We all just have to wait it out with cautious optimism.  My taste buds are fine - slightly compromised, but good enough - but my saliva is still lagging behind.  It's hard for me to put a percentage on it, but whatever it is it's tolerable.  I asked the RO nurse practitioner if patients ever get full functioning salivary glands, and she said yes, and that they usually see it in about 2 1/2 - 3 years.  I'm sure that's not always the case and my tendancy is to be cautious about expectations.  But on the other hand hope is a very powerful thing that keeps us looking ahead to a positive future and that shouldn't be disregarded.

     

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #4
    8 months after treatment,

    and I feel taste and saliva are in the 50-60% range.

    Ironically, I'm at a much healthier weight, now (30 pounds lighter) - so in a way, I consider it a blessing ... Lol!....

    philly, it sounds like you had a more challenging treatment, than I did. I hope you continue to improve!

    mg

  • Duggie88
    Duggie88 Member Posts: 760 Member
    edited March 2020 #5
    Howdy Philly Boy

    I am just north west of you in Bernville, PA.

    I had my throat overhaul in Philadelphia at the University of Pennsylvania back at the end of 2009. They told me after treatment that whatever I don't get back in a year is most likely gone. I can say three years afterwards I was still regaining things. 

    You have a great positive attitude which in my book helps one through the long process of recovery.

    Jeff

  • Clon
    Clon Member Posts: 20
    edited March 2020 #6
    Taste and Saliva

    I finished up treatment in July 2017. I have most of my taste back except sweets.  I still don't like sweets, but that is probably a good thing. It will help me control my weight.  I do have most of my saliva back, and can even eat a meal without having to take a drink with every bite.  

    I seem to gain a little every few months, and I fugure I will be pretty much back to normal within a year.  I still have little side effects from radiation  and chemo, but nothing I can't live with.  It is great having my life back.

    Charlie

  • campypru
    campypru Member Posts: 1
    edited June 2020 #7
    Mucus production in mouth and throat

    Any suggestions on mouthwash.

     

     

     

     

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #8
    camp,

    There's a recipe for "homemade" mouthwash (water, salt and baking soda). My GF made it and I used it several times a day.

    I also had a prescription for "magic mouthwash" - which included a pain killer element.

    I hope this helps - I wish you the best of luck!

    mg

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