Can throat & Saliva still improve after 5 months ?

Robyn64
Robyn64 Member Posts: 124
edited January 2015 in Head and Neck Cancer #1

Hi there,

Wondering if the throat and saliva can still improve 5 months after treatment ? I wrote a post on here not long ago about my tongue condition, seems nobody has ever heard of it, didnt get a response. Unfortunately only 2 % of the population get it and I just happen to be part of that bloody 2 % !

My throat still hurts on and off but its tolerable. I have trouble with swallowing certain foods , but getting to know my limits , cant eat any bread , just wont go down unless dipped in gravy or something like that. I guess its a blessing somehow , bread is fattening. I have ( not sure if its permanent ) totally lost my very sweet tooth. I still want the cakes , pastries, lollies and all those yummy things. But somehow trying to retrain my brain that no matter how yummy it looks , remembering my old favourite cakes and tastes , that none of them appeal to me at all now. I guess that is also a good thing. But unsure if that is permanent. Gravy is my best friend nowadays.

I havent put on weight but have now managed to maintain at a really good level. I have lost approximately 63 lbs, I was quite overweight , now Im totally different.

As for my tongue, initially drs said it was Mucositis , which it was. Then it cleared just slightly and drs then believed I had thrush on my tongue. I had sooo many different medications for this including a very expensive one they gave me for free as it wasnt on the market here yet to try. None worked. I finally went to my gp about results of another test and asked again about my tongue and why medications didnt work, I tried every single medication for thrush. He took one look and said thats not thrush , its Geographic tongue.  Its where you lose the top layer of your tongue , which is the taste buds. Can be all sorts of reasons why people lose it. Parts of the tongue become smooth and patchy and some areas look a bit white around edges resembling thrush. Apparently the smooth and patchy areas move around the tongue like mapping which is why the name, usually towards back of tongue. Anyway , my drs at the hospital dont know this yet , I see them next month. At the moment they still think its thrush. I have read a bit on it and some reckon to see your dentist as some drs dont know about this condition. Some things online say it can disappear and others say can take a few years. My tongue hurts when I roll it  and the back of it feels like there is an extra layer which is the mapping areas. Trust me to get a condition that only 2 % of the worlds population gets. I spoke to a nurse , after explaining the condition she believes the radiation did it, so do I. I am hoping my tongue returns back to normal and I really hope that drs at the hospital know about this condition when I see them next month.

So could my saliva and throat still improve even though its been 5 months ? Or is this basically going to be it ? I can live with it , but who wants to ?, not me.

Thanks ,

Robyn

 

Comments

  • Moki
    Moki Member Posts: 53
    #2
    Sorry

    I am sorry to hear what you are going through. I do not have your toungue issue, but I had difficulty swalling since week 5 of raditation all the way till few days ago (6 weeks after radiation): I also used gravy and ketchup and mayo in everything. My doctor didn't know what was causing it and they suggested to do a swalling evaluation: have you done it? I did not do it, because I reserached a lot and thought is was esophagitis so I decided to wait and luckely things improved.

    Regarding saliva, I found acupuncture very helpful to restore it: I am almost at normal level.

    Regarding taste buds, I was lucky they returned already during my last week of radiation, but the doctor told me it could take up to 1 year to come back.

    Sending good vibes, I know how bad it is not be able to swallow, taking forever to eat and not be able to enjoy a nice restaurant dinner with your friends without ordering eggs....

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Things most certainly can improve

    after 5 months.....I'm still getting improvements after 2 1/2 years.  I thought after 1 year, that was it....I'd hit the peak of improvements....but I was wrong.  I remember Skiffin saying he got his sweet tooth back after 3 years.....I'm noticing that mine is getting better monthly even at this stage of the game.  I still have to eat bread with lots of butter or dipped in gravy, but I know my saliva has improved along the way, too.  Getting closer to the old normal takes a LOT of time....

    Because of the above improvements, I think there's a good chance your tongue will get better......plus all the other abi-normal things you're mentioning. 

    p

  • thennies61
    thennies61 Member Posts: 285
    #4
    phrannie51 said:

    Things most certainly can improve

    after 5 months.....I'm still getting improvements after 2 1/2 years.  I thought after 1 year, that was it....I'd hit the peak of improvements....but I was wrong.  I remember Skiffin saying he got his sweet tooth back after 3 years.....I'm noticing that mine is getting better monthly even at this stage of the game.  I still have to eat bread with lots of butter or dipped in gravy, but I know my saliva has improved along the way, too.  Getting closer to the old normal takes a LOT of time....

    Because of the above improvements, I think there's a good chance your tongue will get better......plus all the other abi-normal things you're mentioning. 

    p

    I still have to cut up or

    I still have to cut up or grnd the food up somewhat to eat plus either with mac and cheese or something like that.I thought I was getting to much slivia but came to find out the liquid weather water coffee or whatever will sit in the pockets around my tounge.But my throat will feel like it's it's dried out .I did have the swallowing test and can eat anything but I still cut it up mainly because I don't have my teeth yet to chew and can alittle timid about not swallowing something to big.But with time everything is coming slowly and getting comfy with the new me.As they say give time time

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    side effects

    Robyn,

    At 2y10m my saliva, taste buds and sweet tooth are still improving.  I know because I am constantly testing each.  This coming from a guy who lived mainly on smoothies for 7m.

    Currently, nothing is like the “old normal”, but the “new normal” enjoys most of my favorites (some be it faintly) except Clam Chowder, but I am still trying.  I still need glasses of water at every meal, but I can eat a bowl of Popcorn with hardly a sip.

    Things (for me) are getting better and I hope they do for you too.

    Matt

  • JC F
    JC F Member Posts: 74
    #6
    Moki said:

    Sorry

    I am sorry to hear what you are going through. I do not have your toungue issue, but I had difficulty swalling since week 5 of raditation all the way till few days ago (6 weeks after radiation): I also used gravy and ketchup and mayo in everything. My doctor didn't know what was causing it and they suggested to do a swalling evaluation: have you done it? I did not do it, because I reserached a lot and thought is was esophagitis so I decided to wait and luckely things improved.

    Regarding saliva, I found acupuncture very helpful to restore it: I am almost at normal level.

    Regarding taste buds, I was lucky they returned already during my last week of radiation, but the doctor told me it could take up to 1 year to come back.

    Sending good vibes, I know how bad it is not be able to swallow, taking forever to eat and not be able to enjoy a nice restaurant dinner with your friends without ordering eggs....

    Acupuncture...

    I was considering trying acupuncture for my saliva. I'm five months out and very dry. How many treatments did you do to start seeing results? Do you have to keep on doing the treatments or did you stop and still maintain the effectiveness? If anyone else has tried this please chime in. Thanks.

  • MrsBD
    MrsBD Member Posts: 617 Member
    #7
    Throat and saliva

    I'm sorry you are having so many problems. Definitely try acupuncture for increased saliva. My oncologist recommended it be done during the weeks I was in treatment, but it can still help after you are done. I never lost my sense of taste and retained most of the salivary gland function. I did have mucositis, stubborn thrush, and a sore throat, too. I would wait a little longer before settling on the geographic tongue diagnosis. Radiation damage moves around on your tongue and in your mouth, too. It can take quite a while to finish its travels! 

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    CivilMatt said:

    side effects

    Robyn,

    At 2y10m my saliva, taste buds and sweet tooth are still improving.  I know because I am constantly testing each.  This coming from a guy who lived mainly on smoothies for 7m.

    Currently, nothing is like the “old normal”, but the “new normal” enjoys most of my favorites (some be it faintly) except Clam Chowder, but I am still trying.  I still need glasses of water at every meal, but I can eat a bowl of Popcorn with hardly a sip.

    Things (for me) are getting better and I hope they do for you too.

    Matt

    Normal- HA...

    Matt, when are you going to concede..., you are like me, Abi-Normal...

    But to the OP, yes.., it took all of 2 plus years to completely get all of my taste back.., only around 95% of saliva.. But that usually only dries a little at might during sleep..



    LOL..., then I go and have a Whipple, and lose some of that taste that I had regained..., ugh..

     

    Best,

    John

     

  • MrsBD
    MrsBD Member Posts: 617 Member
    #9
    Moki said:

    Sorry

    I am sorry to hear what you are going through. I do not have your toungue issue, but I had difficulty swalling since week 5 of raditation all the way till few days ago (6 weeks after radiation): I also used gravy and ketchup and mayo in everything. My doctor didn't know what was causing it and they suggested to do a swalling evaluation: have you done it? I did not do it, because I reserached a lot and thought is was esophagitis so I decided to wait and luckely things improved.

    Regarding saliva, I found acupuncture very helpful to restore it: I am almost at normal level.

    Regarding taste buds, I was lucky they returned already during my last week of radiation, but the doctor told me it could take up to 1 year to come back.

    Sending good vibes, I know how bad it is not be able to swallow, taking forever to eat and not be able to enjoy a nice restaurant dinner with your friends without ordering eggs....

    Eggs, eggs, and more eggs

    Moki- I had to laugh when I read your last sentence. So, I'm not the only slow chewing, water gulping, egg eater out there!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    i had my last rad tx

    i had my last rad tx 10/22/09.  total laryngectomy 2/28/12.  just last month i was able to start eating chocolate again!! that's good and bad b/c now i eat it EVERYDAY and i'm gaining weight that i DON'T need.  so, yes, it can most definitely improve after only 5 months.  just keep trying new things, today maybe they wont' taste right but next week they may.  i never gave up on choc......i also have my salavia back.  i don't remember how long that took tho.  its been too long for me to remember.  wishing you the very best.

    God bless you,

    dj

  • Robyn64
    Robyn64 Member Posts: 124
    #11
    debbiejeanne said:

    i had my last rad tx

    i had my last rad tx 10/22/09.  total laryngectomy 2/28/12.  just last month i was able to start eating chocolate again!! that's good and bad b/c now i eat it EVERYDAY and i'm gaining weight that i DON'T need.  so, yes, it can most definitely improve after only 5 months.  just keep trying new things, today maybe they wont' taste right but next week they may.  i never gave up on choc......i also have my salavia back.  i don't remember how long that took tho.  its been too long for me to remember.  wishing you the very best.

    God bless you,

    dj

    Thanks

    Hi Debbie,

    Gee Debbie, You have fought some wars.  Yes its me on your facebook, just cant reply through messenger on my phone. 

    Still issues with my tongue, but can live with it. Just hoping it goes away. See my oncologist next month, will see if he knows about my tongue. Recovery is a very long process.

    Thanks Debbie, 

    Robyn

  • Robyn64
    Robyn64 Member Posts: 124
    #12
    Thank you

    Thanks everyone.  Recovery is such a long process. I can live with the condition of my tongue, many people much worse off than me.

    But am really hoping it goes away. Nobody wants a sore sensitive tongue the  rest of their life. Will ask my oncologist about it when I see him next month.

    Thanks, 

    Robyn

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #13
    Robyn

    You will be surprised how much improvement is ahead of you. Some things took me 2 to 3 years to reagain more noteably brown licorice and peanut M&Ms. My saliva never really improved much which means I will never win a hot dog eating contest because I need extra time eating many things however I can slug a milkshake down with the best of them. I would also say your throat will definately improve.

    Life is good................heal on

         Jeff

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