checking out of Phrannies pocket bc NED is here!!!!!

vermontgirl
vermontgirl Member Posts: 66
in Head and Neck Cancer #1

Met with onc MD and surgical MD yesterday who said that PET was clean and clear, nothing lit up, no cancer cells reared their ugly heads.  He did say that the landscape has changed and that there was "junk" left over from the enlarged lymph node that had a large tumor.  But he said it was not cancer...just junk.  THe surgical MD palpated inside and out and said that his neck feels normal, symmetrical and supple.  He congratulated us.  Plan is see onc MD or rad MD every 6-8 weeks for scope/prodding.  He will do another contrast CT in 4 months (he had PET and contrast CT a week ago) to compare.  As soon as they have two similar CT scans, then they go to chest xray every year.  After one year, they will see him every 4 months, and then....extend the visits again.  They test thyroid every 6 months.

 

He wanted to make sure my hubby was doing fluoride which he stopped during treatment.  My hubby tried to resume last night....but had immediate flem and some blood.  Anyone else had trouble restarting the fluoride?  Also....hubby HATES swallow person....so avoids making those appointments....but has noticed that his opening his mouth is tight.  SO....onc MD STRONGLY encouraged him to do his exercises....he said that once it starts, it is very hard to recover it back.  Hopefully that made an impression.  THere is another swallow person that I will see if he can change to.

 

Thank you all so very much.  It is gruelling but so very worth it to hear those words.  Now....onto our next challenge.....making NED happy so he will stay....Fish Oil, vitamin D, relax time, exercise, and prayer.

 

I wish everyone could have the sense that we all get from enduring this diagnosis of how every little thing in life is precious and how the things that you used to think matted really don't.  To family and friends....CSN is both.

 

Thanks - Kirsten

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Congrats...

    Yep, you know it...

    Things that were once thought to be most important, not so much anymore...

    The things that were small before, now are huge....

    JG

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    WOOT!!!

    I'm SO happy to hear that all is well.  I love love love NED's, but I sure do know how stressful it is to wait for the good word.  You tell him he HAS to do his exercises, or a cheeseburger deluxe will never fit in (that would be hell! Laughing).  Open wide many times a day...stick tongue out, move from side to side, move jaw side to side....tell him you have no desire for a future of poking food into his gullet like a mama bird...LOLOLOLOL....

    Now I hope you two danced around the kitchen....

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    kirsten, congrats to u and ur

    kirsten, congrats to u and ur hubby!!  that is the news we live for.  i will pray for all neds in the future.

    God bless,

    debbiejeanne

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #5
    Congrats on your first NED

    All NEDs are good, but the first one is the best!  It is the first sign that you are on the road to new-normal and can start to think about life after cancer, not life with cancer.  One of the best things this site does is to let folks like you report the good news, and for others to see that THEY can make it through, too.

    I have my four-year scan this coming Monday.  Even though I sense nothing to worry about, that little bit of scan-xiety is still there, even four years down the road.  That's the lingering cruelty of this disease--it never lets you be confident that this is 100% over.

    Regardless of that, enjoy your first NED--you and your caretakers have earned the big exhale that comes with that great news!

    Mike

     

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #6
    Mikemetz said:

    Congrats on your first NED

    All NEDs are good, but the first one is the best!  It is the first sign that you are on the road to new-normal and can start to think about life after cancer, not life with cancer.  One of the best things this site does is to let folks like you report the good news, and for others to see that THEY can make it through, too.

    I have my four-year scan this coming Monday.  Even though I sense nothing to worry about, that little bit of scan-xiety is still there, even four years down the road.  That's the lingering cruelty of this disease--it never lets you be confident that this is 100% over.

    Regardless of that, enjoy your first NED--you and your caretakers have earned the big exhale that comes with that great news!

    Mike

     

    Yaaaaaayyyyyy!!!

    VERY GOOD NEWS!!!!!

     

    So happy for you Kirsten ....

     

    Tim

  • VanessaSLO
    VanessaSLO Member Posts: 283
    #7
    Congrats!

    Uh, it's great to hear NED. It must be such a relief! Go out and enjoy!! I'm very happy for you!!!

  • Billie67
    Billie67 Member Posts: 898
    #8
    VanessaSLO said:

    Congrats!

    Uh, it's great to hear NED. It must be such a relief! Go out and enjoy!! I'm very happy for you!!!

    Awesome!!!
    NED NED NED! I'm so happy for you guys and now you can breathe a sigh of relief.

    The flouride hasn't done that to me, sorry I can help there.
    The swallowing exercises MUST be done or he will be horribly sorry later. If he doesn't like the therapist doing the swallow therapy he can at least take what he's been taught and keep doing it.

    Again, so happy for you both!!
    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #9
    nice report

    Kirsten,

     

    Clean and clear, make room for NED.

     

    A treatment well received.

     

    Matt

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #10
    Congrats Kristen with hubby's NED

    Yep...........when told NED you have an inner peace that can't be put to words. The trees look different the sun shines differently, and life takes on a new meaning. Makes what you had to go through all worthwhile.

    Enjoy today........it's practice for tomorrow

          Jeff

  • katenorwood
    katenorwood Member Posts: 1,912
    #11
    Smiling for you both !

    Kirsten,

    NED...I never get tired of hearing this !  It's hard won, and the healing trip is not fun.  If you can get him into another swollow person, that would be good !  I know if we don't click with our providers things won't progress the way they should.  For today, enjoy the fantastic news.....and I like Phrannies description of moma bird feeding baby....oh my !  Hugs sent !  Katie

  • hwt
    hwt Member Posts: 2,328 Member
    #12
    katenorwood said:

    Smiling for you both !

    Kirsten,

    NED...I never get tired of hearing this !  It's hard won, and the healing trip is not fun.  If you can get him into another swollow person, that would be good !  I know if we don't click with our providers things won't progress the way they should.  For today, enjoy the fantastic news.....and I like Phrannies description of moma bird feeding baby....oh my !  Hugs sent !  Katie

    Exercises

    Only wish I had known about the exercises to open my mouth as wide as I once did. Exercise, exercise, exercise rather than regret it later.

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