NED - 3 years

donfoo Member Posts: 1,771 Member

Haven't seen a NED report lately so figured I'd post one. It is always be reminded that many do get past the ordeal and return to living life as fully as before. Nobody forgets the support offered here and the family on the forum, dropping in occasionally but the absense of most is good sign that daily life is as full and hectic as ever.

At three years post for my diagnosis, the doctors pretty much are giving me an unofficial "cured" card. No more planned scans and the MO gave me a final handshake and smile. The ENT still wants to see me every few months as it is always possible for cancer to return but it would likely be something symtomatic that sends up a flag.

Everyone has a unique set of circumstances so each journey back to "normal" is different. Very few have zero lingering side effects and some are fortunate like me to suffer very few.

Over the three years my taste is 100% back, my appetite is 100% back, my parotid glands are 100%, amazingly, thyroid still working 100%. Basically I am very blessed to have my health and life intact. The last thing to return to 100% is the ability to eat very spicy foods. Until recently, my head would sweat like crazy but even that has gone away and no commercially prepared dish burns my mouth or makes me sweat. Naturally, the specially online ordered crazy hot blends are still nuclear as ever. :)

The one long term side effect is the muscle stiffness in my neck from the radiation. It goes from my shoulder to my ear, and under my jaw to my chin. It is like a charlie horse and craps up fairly often and mostly happens when I've been staring at the screen for too many hours and I forget to self massage and stretch. 

A long NED report but I hope is uplifiting to those on the battlefield. Every day, every hour at times, is a huge struggle. Keep putting one foot in front of the other and tuck away reports like mine in there too. You will survive and find your new normal in time!  Good luck!




  • SusanUES
    SusanUES Member Posts: 125

    Wonderful to read this post and it's of great encouragement to those of us just beginning the journey or a little further along the path.  Does my heart good whenever I read positive and uplifiting threads, so thanks for taking the time to write this.  I...and many others...are looking forward to the day when we can write something similar.  Cheers!

  • MrsBD
    MrsBD Member Posts: 617 Member

    Thank you always posting such uplifting messages. This latest one is super! I wish you many more NEDs.

  • the_wife
    the_wife Member Posts: 184
    Congratulations!!!! That must

    Congratulations!!!! That must be a great feeling! 

    I'll have to pass on the good news to my hubby. He is 9 months out and still has 0 appetite. Seems like a long way from 0 to 100% but his taste is slowly returning and that is very exciting. Best of luck to you always and...

    Bon Appetit!!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    3 years NED




    donfoo celebrates 3 years NED with all systems back to functional.  Congratulations!




  • hawk711
    hawk711 Member Posts: 566


    VERY happy to hear your NED news.  I hit 6 years on April 1st myself.  All of the warriors on CSN need to hear your news and feel confident In their journey. 


    All the best


  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Wonderful news!

    So happy to hear!

  • yensid683
    yensid683 Member Posts: 349
    edited June 2016 #8

    I'm very happy for you DF. successes are what drives all of us to 'ride the dragon' that is treatment for cancer be it chemo, rads or surgery.  It's great that you're doing so very well.


    now just keep it up :-)

  • Barbaraek
    Barbaraek Member Posts: 626
    edited June 2016 #9
    Uplifting for sure

    We hope to report another NED next month when my husband goes for what he calls his "3 month inspection sticker". It's wonderful to hear your taste and appetite are back. We're still struggling with those, but it's only been 10 months since the end of treatment.

    Live well and prosper my friend...and thanks for continuing to visit the board to offer suggestions, information and hope.


  • stevenpepe
    stevenpepe Member Posts: 234
    This is great news and very

    This is great news and very encouraging. Thank you for the tips and advice you've offered to many of us in this forum.

  • wmc
    wmc Member Posts: 1,804
    Don I enjoyed this report, and of course...NED

    This was a wonderful report and explanation which will help the "Newer" members to the group.  You are four months ahead of me. With the H&N it covers so many different areas and treatment options. Some get radiation first to shrink, with the hope they can save that area without surgery, and some it does and some they still need surgery. Some do the surgery first then Radiation and chemo. Then there is a few like myself never had radiation, but they went into detail what and how I was going to have it just did that before the tumor board all got together and saw my lungs. So my only choice was surgery and remove my larynx. 

    Don, you and Matt, Phrannie, Debbie, Skiffin, Josh, Lorna and so many others stayed on site, as I did to try to support and help answers questions for the ones just told those three words they will never forget. To have answers and advice from someone who lived it is special and no one that has not gone the road really doesn't understand. Now I was very lucky as I received support from so many and of course you. The best part is I was lucky to get to meet you face to face, and I will never forget that, and what an enjoyable day that was.  I am very glad I got to get help, and a special friendship with so many. May all your days be blessed as you have touched so many lives.


  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Don


    That is some wonderful news to hear my friend, whatever you are doing just keep doing it.


    I pray that God will continue to bring NED reports into your life




  • Roar
    Roar Member Posts: 269 Member
    Hi don

    glad to see fellow survivors still in the room and doing well. This Christmas will be 5 years for me, and I too have the unofficial all clear. Normal, for me is a little differant, but I am leading a wonderful blessed life. Glad you are doing well Don- keep fighting

  • Kenny-
    Kenny- Member Posts: 99 Member

    don, thanks for sharing. I'm sure it's very uplifting for you, but the sharing of this news is also quite encouraging for some of us who have just begun traveling down this road. Thanks for sharing!

  • Joanielo
    Joanielo Member Posts: 55

    Congratulations!  I almost feel like you are my cancer partner since we were going through our treatments at the same time.  I am happy that we are both doing so well and that we are enjoying life again. It was worth the fight!

  • Guzzle
    Guzzle Member Posts: 710
    GUZZLE Greetings

    Chuffed for you Dom my old mate. 

  • kdot2003
    kdot2003 Member Posts: 143
    Thank You

    Thank you for that report.  I'm about to get six month scans and I'm a little nervous.  So wonderful to hear good news.  Thank You.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    Hanging with Mr. NED!

    Great news Foo! Glad to hear you're doing well!

    Positive thoughts and prayers


  • jthornsbury
    jthornsbury Member Posts: 62

    great news! I go for my 3 year (give me your blood and jump in the tube) visit at the end of the month! I too have been having major spasms on the blast side of my neck...the gift that keeps on giving! Need to do those daily stretches and get a regular massage also! Besides that everything else is doing great -- no problems with saliva or appetite! 

  • MJG1
    MJG1 Member Posts: 137 Member
    Yeah, Donfoo

    Thank you for such an uplifting post.  We are at the very beginning of our battle and it's wonderful to see someone who is on the other side of the battle and winning.  Many blessings for you!  MGJ1

  • armana
    armana Member Posts: 97 Member

    I am so happy for your NED status and overall great health conditions. Just curious if you still suffer from dry mouth..