On the Journey

jthornsbury
jthornsbury Member Posts: 62
in Head and Neck Cancer #1

Friends,

 

Completed treatment 30 rads IMRT on April 19 and am close to five months out.  Have gone back to "regular" food but watch the spices and the chips...yet my mouth still out of nowhere stings and hurts.  It comes and goes and is not really tied to a certain food.  Is this part of the journey?  Still waiting on my first Pet Scan after treatment at MDA...seen ENT six weeks ago and he said everything looked great! Just wonding....

 

Jon

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    food for thought

     

    Jon,

    The journey never ends, I think there will be twists and turns to our eating habits from here on out.

    While I did not eat seriously for many months I was always trying things (anything and everything).  Many, many meals consisted of 2,3 or 4 bites, that’s all.  I carried around an igloo cooler full of water and protein drinks (whatever works).

    Today, at (going on) 18 months out I still cannot win a pie eating contest, but I can eat just about anything.  On average it takes me 2 to 3 glasses of liquids for each meal. 

    Good luck on your next scan, it sounds like you are moving forward at a good H&N speed.

    Matt

     

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #3
    CivilMatt said:

    food for thought

     

    Jon,

    The journey never ends, I think there will be twists and turns to our eating habits from here on out.

    While I did not eat seriously for many months I was always trying things (anything and everything).  Many, many meals consisted of 2,3 or 4 bites, that’s all.  I carried around an igloo cooler full of water and protein drinks (whatever works).

    Today, at (going on) 18 months out I still cannot win a pie eating contest, but I can eat just about anything.  On average it takes me 2 to 3 glasses of liquids for each meal. 

    Good luck on your next scan, it sounds like you are moving forward at a good H&N speed.

    Matt

     

    Fluids

    Matt,

    I hear you loud and clear on the glasses of fluid per meal. My wife will make a nice meal and if it isn't moist enough, the sip with every bite begins. I fill up on fluids before completely eating the food on the plate. The bright side is that I can chew and taste most foods.

    My Best to You and Everyone Here

  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Five months out

    seems like a long time, but with the treatment we received it's still babystep time.  Something that didn't sting last week, may sting this week....but in 5 days, it doesn't sting again.  I think this part of things started leveling out when I was 9 or 10 months out....where I actually had to do something non-brilliant (like use medium salsa on my eggs) to get my mouth to sting, but generally the burning was over.  That's not to say that everything I'd like to eat can be eaten....I might be hungry for something, but lack of spit makes some things uncomfortable to eat....meat is one of those things.

    So I'd say....yup, you're still on the journey....but right where you should be.  I used to follow Matt...whatever he tried to eat, I'd try to eat.  I can match him ear for ear if we got into a sweet corn contest, but his steak eating abilities would leave me in the dust.

    p

  • catluver96
    catluver96 Member Posts: 73
    #5
    Thanks for the topic. I'm

    Thanks for the topic. I'm learning some things here, too.

    Being over 10 months out, I sometimes get down right anxious trying to eat meat. Even with water it can be hard to control at a comfortable level. Makes me want to run back to my smoothies, yogurt, cottage cheese, etc. Spaghetti goes down well with added olive oil. :)

    Some foods just burn too much. Like salad dressings and mild Mexican food. I've been trying enchiladas with gravy on the side.

    Hang in there. Things are ever changing as we heal.

     

    ~Vicki

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #6
    lots of water!

    I drink lots of water and wash everything down :)  I'm almost 2 1/2 months out and tried spicy...it was horrible!  Sweating, burning and chugging water by the glassful!  It's a slow, experimental process!  Keep up the healing!!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Time...

    Time is on your side...

    I'd think you would have had a scan by now, especially from MDA, but at five months out, I'd presume you to have good results.

    As for eating, taste, saliva, etc... I was probably nearly two years out to get where I am now and have stayed...

    That would be 100% on the taste, and a good 95% saliva...

    Hopes you will progress to this point and even faster...

    John

  • NelsonOng
    NelsonOng Member Posts: 47
    #8
    TracyLynn72 said:

    lots of water!

    I drink lots of water and wash everything down :)  I'm almost 2 1/2 months out and tried spicy...it was horrible!  Sweating, burning and chugging water by the glassful!  It's a slow, experimental process!  Keep up the healing!!

    It Will Gets Better

    Jon

    i am 4 mths out and it does gets better.  Spicy food still hurts but I never gives up. Now I can take sashimi wt wasabi but admit my spice tolerance can't compare to the past. Normal spice curry still fine with me. Yes my initial stage of taking meat is a problem but not now as am happy I'm able to take KFC (once a while), beef, duck.  Of course some water helps the swallowing better. Bread and biscuits pose a problem and yes i need more water to swallow  My setback is when I go running, mouth drys up pretty fast.  I wl suck on sugar free candy so as to keep my mouth moist.  I hv a few types of mouthwash and I change about to use them each day.

    Nelson

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #9
    Skiffin16 said:

    Time...

    Time is on your side...

    I'd think you would have had a scan by now, especially from MDA, but at five months out, I'd presume you to have good results.

    As for eating, taste, saliva, etc... I was probably nearly two years out to get where I am now and have stayed...

    That would be 100% on the taste, and a good 95% saliva...

    Hopes you will progress to this point and even faster...

    John

    Weird saliva thing

    After starting out with almost no saliva, post Tx, now I have a lot of it in the front of my mouth, but am still pretty dry on the back of my tongue.  I actually have an excess sometimes on the front, and drool or spew it out while talking--but still need lots of water to get food down all the way.  Has this happened to anyone else?

    Mike

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Mikemetz said:

    Weird saliva thing

    After starting out with almost no saliva, post Tx, now I have a lot of it in the front of my mouth, but am still pretty dry on the back of my tongue.  I actually have an excess sometimes on the front, and drool or spew it out while talking--but still need lots of water to get food down all the way.  Has this happened to anyone else?

    Mike

    Location is Everything...

    I'm not sure how your saliva has been progressing... But when mine was starting back, it was more in different areas, eventually the same as pre-Tx, just dries out in the middle of the night.

    JG

  • jcortney
    jcortney Member Posts: 503
    #11
    Getting better almost daily

    Jon,

    I'm seven months out and still have a mouth ulcer pop up from time to time.  My Med Onc says this is very common (along with the occasional battle with thrush) and will continue for some time.  The good news is I can eat more almost daily.  I finally can eat mexican food with half mild half medium salsa.  Still burns, but I can eat it.  Dry meat and bread requires copious amounts of water and quite frankly isn't worth the effort but I still keep trying.  My real problem with food is the time it takes me to eat.  Going out to dinner with friends means I'm not going to be able to finish a meal as everyone is done before I'm even half way.  So, I'm now ordering less and eat again when I get home.

    Hang in there as it seems that you reach a point in the healing and all of a sudden you make some seriously large leaps.

    Joe

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #12
    Mikemetz said:

    Weird saliva thing

    After starting out with almost no saliva, post Tx, now I have a lot of it in the front of my mouth, but am still pretty dry on the back of my tongue.  I actually have an excess sometimes on the front, and drool or spew it out while talking--but still need lots of water to get food down all the way.  Has this happened to anyone else?

    Mike

    same here

    I never had dry mouth except when I first wake up...dry as can be.  I rinse, brush, rinse and I'm good to go for the day.  The back of my tongue/mouth never seems to have much saliva, but the front has almost too much.  I can eat pretty well, but swallowing a pill takes a LOT of water to rinse it down.  Certain foods too. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #13
    jcortney said:

    Getting better almost daily

    Jon,

    I'm seven months out and still have a mouth ulcer pop up from time to time.  My Med Onc says this is very common (along with the occasional battle with thrush) and will continue for some time.  The good news is I can eat more almost daily.  I finally can eat mexican food with half mild half medium salsa.  Still burns, but I can eat it.  Dry meat and bread requires copious amounts of water and quite frankly isn't worth the effort but I still keep trying.  My real problem with food is the time it takes me to eat.  Going out to dinner with friends means I'm not going to be able to finish a meal as everyone is done before I'm even half way.  So, I'm now ordering less and eat again when I get home.

    Hang in there as it seems that you reach a point in the healing and all of a sudden you make some seriously large leaps.

    Joe

    Joe....

    Doggie bags were meant for us Laughing.  I always end up bringing home a doggie bag to eat later, since I can only eat so much in an alloted time period (about half)....come home and finish it up. 

    I love French bread, but of course can't eat it without a half gallon of water unless................I soak soup up with it!  It's just as yummy, only soggy....It's especialy good dunked in Vegitable Beef.....and a close second is Loaded Potato soup.

    p

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