Many neck cancer issues still

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

 post radiation 7 months and still no taste,saliva and dry mouth. Walk with a limp. Ears blocked with thumping sounds. Trying some solid foods but gag. Thank God for peg tube for two cal liquid. Can this continue forever? Any experiences to share?

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  • bebo12249
    bebo12249 Member Posts: 181 Member
    edited March 2018 #2
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    Yes, it seems like forever

    Yes, it seems like forever but it will slowly get better. I finished my treatment in October and was hoping to enjoy my Christmas dinner - you know how that worked. A year later I could reconize the taste of most everything on my plate. improvement happens very slowly but it will happen. Hang on

  • OKCnative
    OKCnative Member Posts: 326 Member
    #3
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    Have you considered a swallow

    Have you considered a swallow study? Did wonders for me and other son this board. The day before my study I would put solid food in my mouth and then panic and spit it out. The evening after my swallow study and I was eating my favorite Mexican food.

    I just needed to see the food going down my throat as I swallowed and see what I was feeling. They also initially had me drinking milk with all meals and a swallow of milk with eat bite. Weened off the milk once I realized I could eat anything and my weight was coming back on nicely.

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    edited March 2018 #4
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    OKCnative said:

    Have you considered a swallow

    Have you considered a swallow study? Did wonders for me and other son this board. The day before my study I would put solid food in my mouth and then panic and spit it out. The evening after my swallow study and I was eating my favorite Mexican food.

    I just needed to see the food going down my throat as I swallowed and see what I was feeling. They also initially had me drinking milk with all meals and a swallow of milk with eat bite. Weened off the milk once I realized I could eat anything and my weight was coming back on nicely.

    swallow study?? is there a

    swallow study?? is there a video on this or is it the same as swallowing exercises for head and neck cancer. I have documents on 8 exercises for swallowing 

  • MikefromWinthrop
    MikefromWinthrop Member Posts: 31
    #5
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    Darkdancer333 said:

    swallow study?? is there a

    swallow study?? is there a video on this or is it the same as swallowing exercises for head and neck cancer. I have documents on 8 exercises for swallowing 

    swallow study

    It is where you swallow various food and drink with barium added, and a video by xray is taken.

  • Curlyn
    Curlyn Member Posts: 189
    #6
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    I agree c OKC, has your

    I agree c OKC, has your swallowing been assessed. Maybe you need real food, soft and smoothies. I feel like the more I tried to eat, the more I could taste ( or at least experiment c taste).

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #7
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    I hear you

    phillyboy,

    7 months was the BIG turning point for my taste buds.  They switched from confused and wrong, to focused and right.  I have faith that the issues which you face will be resolved each in their own time to a level commensurate with your personal satisfaction.  My “new normal” has an address in a different town than my “old self “, but it is just as nice in the new place, just different food and drink in the frig and a slew of new drugs in the medicine cabinet.  There is no going back, only forward.

    What worked for me was mine and you need your own custom plan for you.  I tried many of the suggestions from my (great) fellow H&N friends, but I wanted to shout “I do not like this (or that). I switched from PEG to fluids by mouth and got the PEG popped on week 2 post.  I knew everything had to go by mouth and it did.  I tried everything, I did not eat  much, lots of tasting and sampling.

    Provided that nothing permanent is preventing you from moving forward, you should progress.

    Matt

  • OKCnative
    OKCnative Member Posts: 326 Member
    #8
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    Darkdancer333 said:

    swallow study?? is there a

    swallow study?? is there a video on this or is it the same as swallowing exercises for head and neck cancer. I have documents on 8 exercises for swallowing 

    Like Mike said.... Basically

    Like Mike said.... Basically you just stand in front of a screen with an X-ray camera pointed at you. The nutritionist gives you a series of foods to swallow. You start with basically liquid and work your way up to (in my case) really dry coarse granola. After each swallow you both look at the video and watch the food go down.

    She also had me swallow different sized pills. She said they would most likely get stuck on my epiglottis and she wanted to show me what was happening and how to relive it so I don't panic later on when it happens in real life. Sure enough, they got stuck and she showed me how to get them to go down (stand up straight, take a big mouthful of water or milk, look straight down [chin to chest], and swallow hard). Flushes the pill or stuck food down without fail.

    I wish I would have done the suggested swallow study prior to treatment, just so I could compare the two. One of the unfortunate side effects of radiation and chemo with throat cancer is it really attacks your epiglottis. Mine went from pretty long to almost gone and sticking straight out after treatment (perfect place for food to get stuck). Some people have issues because of this and have to learn a new way to swallow to avoid aspiration. This is one reason I didn't do the PEG tube. Nutritionist said those without a PEG tube who use their throat throughout treatment have far less issues with swallowing after treatment. So far, zero issues with me since the swallow study.

    Be certain and do your throat exercises several times a day. You do not want you throat giving you unnecessary problems after treatment.

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