Brother's First Scan - NED!!

sin9775
sin9775 Member Posts: 199 Member
in Head and Neck Cancer #1

Hello My Friends,

My brother had his scans yesterday and found out this morning that he is NED!  To say that I had a fair amount of scanxiety about his first scan post tx, is an understatement.  My family and I were definitely dancing around the kitchen table with the good news. 

Apparently one of his nodes isn't "perfect", but the doctor doesn't seemed worried about it.  I have read enough on this site to realize that at only 3 - 4 months out from rads, that it is not unusual for nodes to "light up" a bit.  They are taking the wait and see approach.  Next scan in 3 months.

His primary source of nutrition is still through the PEG (he uses Jevity), which his Nutritionist is none too happy about.  Hopefully he will dig down deep and start making himself eat.  Apparently he still has practically no taste, and the consistency of food totally grosses him out.

My best to you all.  I am constantly stalking!

God's peace.

 

~Shawn~

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Whoo Hoo on the NED

    my favorite fella!  Hope he starts testing things out to eat....even if he can find one thing he can build on it. 

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    NED night to you

    Shawn,

    Pass along my congratulations of being NED.

    I ditched my PEG over a liquid diet well before I could harness the will (feel) to eat.  I tried to eat all the time; I wanted to know the moment my taste buds woke up.  Even though the feel of most foods disgusted me, I became quite fond of my smoothies.

    Needless to say, the food feel all worked out.

    Do what you got to do.

    Matt

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #4
    WOOHOO!!!!!!

    Happy, happy news!! Forget the kitchen table...dance around the entire house!  Have someone take him to a buffet.  That's what my family did.  It's too expensive not to eat *something*, and I could try everything and see what tasted good (or tasted at all) to me! :)  Worked great!  I found I could eat and taste (and like) green beans, mac and cheese and fried okra.  Odd combination, but it was DELISH!  haha  Very, very happy to read the great news!  

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #5
    Good NED news

    But all NED news is good news!  The "grossness" of real food will go away, and his taste will come back little by little.  It might not come back all the way and he might have certain sensitivities, but he should get back close to normal, or even all the way.  You both have turned a big corner, so things will get a little better every day, not a little worse, like they did during treatment.

    mike

     

  • hwt
    hwt Member Posts: 2,328 Member
    #6
    Mikemetz said:

    Good NED news

    But all NED news is good news!  The "grossness" of real food will go away, and his taste will come back little by little.  It might not come back all the way and he might have certain sensitivities, but he should get back close to normal, or even all the way.  You both have turned a big corner, so things will get a little better every day, not a little worse, like they did during treatment.

    mike

     

    Shawn

    Congrats to your brother and support group on meeting NED! Reason to celebrate. Might want to try cool whip as a starter. Not much taste on it's own and consistancy might work. Eggs were good for several of us and milk helps things go down easier. He'll get there!

  • NelsonOng
    NelsonOng Member Posts: 47
    #7
    Congrats on brother's NED

    I'm 6 mth out treatment and my taste buds was back on the 5th week post treatment. I never gave up on food even when it taste 

    like cardboard. I was devasted but kept on trying and trying. Everything tastes salty to me but on 2nd and 3rd week, sour and bitter

    taste buds returned.  Finally I'm so relieved on the 5th week, that sweet taste bud returned bit by bid n by end of 5th week, taste

    buds all returned. i can eat most spicy food like curry, chilli padi, wasabi etc.  Don't give up tasting food as somewhat I felt it helps 

    me to regain my taste buds back. Maybe you may want to ask your brother also to try and drink root beer as it somewhat helps me

    to hv some "real" taste on my time when my mouth only tasted salty.  Prayers on the way for both u and brother.  Nelson.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
    shawn, FANTASTIC!!!  i'm do'n

    shawn, FANTASTIC!!!  i'm do'n the happy dance around the kitchen too!!!

    God bless you.

    dj

  • Crazymom
    Crazymom Member Posts: 339 Member
    #9
    NED

    Congrats and hopefully many more to come

     

    Ann

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Awesome...

    I knew he had it in him..., now he don't Tongue Out

    Nest,

    John

  • dunedintech
    dunedintech Member Posts: 90
    #11
    Outstanding

    Great news. Keep on NEDDING. The eating will come back in time.

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