Hey friends made it: 13 YEARS

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  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #22
    cureitall66 said:

    Congrats!

    Congrats on your 13 Years! Sorry you have had to endure so much with this disease. Thank you for sharing your life with us and giving the newbies some hope!

    God Bless,

    ~C

    God bless stay positive when

    God bless stay positive when fighting and except nothing but winning!

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #23
    peggylulu said:

    Rachel 13 year survivor Yay !!!!

    Rachel I am so happy for you and so glad you decided to check in ! It is so good to hear that you are doing better and that you are getting on with your life. Yes Faith is your Angel and what a Blessing she is and Chris sounds like one too ! I just got a NED at MDA and I have to go back in 3 months for a CT. I asked the Doctor while I was there what my chances of getting my taste and salvia back were and he said I would probably get "most" of my taste but not so much of the salvia back .   :( That is depressing to me so I can sure see how you were  depressed ! Hopefully that is behind you now . Check Back in with us when you can .

    Taste came all back even with

    Taste came all back even with my prehistoric treatment, salvia nothing.  I am on a generic for Salagen and works ok it gives me some wetness ask your doc!  Congratulations on the NED!  After all theses years for some reason most likely the tube i pick now to feel sorry for myself and mourn what i lost and keep losing from this animal, doesnt take away one minutenof the Thankfulness that God bestowed on me the blessingnof a cure!  

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #24
    Duggie88 said:

    Howdy Rachel

    Gaining control and acquiring an edge while moving forward.  12 + 1 means you will always be on the plus side and you should strive to enjoy every day of it and it sounds like you’re doing just that.

    I was thinking about you a few weeks back while having lunch with some of the lawyers I work with and I brought up SSD and they said basically that in more cases than not it drags on for a while. That sigh of relief should come for you soon.

    I will soon be able to call you neighbor. Occasionally I drive up to Allentown and negotiate a construction agreement for the eastern part of PA or just to have lunch with some of the guys at the Allentown local. We can maybe do that coffee thing or better yet if you feel up to the challenge we can do the frozen yogurt thing like John and I did.

    Haven’t been on here for a short while but being this was the first post the morning started out with a smile. You can only acquire success by moving forward.

    Life is good

          Jeff

    Jeff Jeff Jeff, cone HELL OR

    Jeff Jeff Jeff, cone HELL OR HIGH WATER here or Allentown you and I will have coffee and frozen yogart!  Looking forward to the day we meet!  Prayibg for you too!

    love, Rach 

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #25
    Sunshine60 said:

    Yay!!!!!

    So good to see you back and gear such wonderful news!   13 yrs.......... What a journey!   Hope your move goes well and you continue to bounce :). Congrats!

    I am fighting everyday to

    I am fighting everyday to find me after the after math just weird it took all this time for my brain to allow it in, but i have all of you, the miracle of my sweet daughter Faith, my Christophet, and my amazingly strong family.... I will "continue" to survive!

    thank you Sunshine!

  • hwt
    hwt Member Posts: 2,328 Member
    #26
    rachel12yrsuv said:

    I am fighting everyday to

    I am fighting everyday to find me after the after math just weird it took all this time for my brain to allow it in, but i have all of you, the miracle of my sweet daughter Faith, my Christophet, and my amazingly strong family.... I will "continue" to survive!

    thank you Sunshine!

    Rachel

    Happy to see you moving forward and on to a new adventure. 

    God Bless,

    Candi

  • rwjw1
    rwjw1 Member Posts: 1
    #27
    lornal said:

    Congrats!

    Contratulations Rachel!

    You got your PEG tube last year - when you were 12 years out?  Were you to the point you couldn't swallow at all - or getting close to that?

    I am 6 years out from tonsil cancer, and just got a PEG tube this week.  I've had 9 dilations since April.  There was 7 weeks between the last two - and lost alot in those weeks.  I have also lost my voice in the last few weeks, and my now non-functioning vocal cords are obstructing my airways.  My throat also hurts (for 15 months) - and I'm only eating if I'm on pain meds.  With all this going on, the doctor wanted to get the tube in before he can't use the kind he likes, and I can start getting hydration and nutriion again.  The doctor will continue to dilate so that I can swallow my saliva.  (Thank goodness - i have always had a fear of water and drowning - I don't know if I could handle that)

    I'm can still take liquids, and will trying to "eat" something once a day.  I have also volunteered to lick plates if there is a yummy sauce!

    Congrats again!

    pegtube

    what happened to your throat  after 12 or 6 years after treatment.what caused the problem.i had throat cancer 2 years out.do i have to worry about getting a peg tube.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #28
    rwjw1 said:

    pegtube

    what happened to your throat  after 12 or 6 years after treatment.what caused the problem.i had throat cancer 2 years out.do i have to worry about getting a peg tube.

    more information

    Rwjw1,

    Welcome to the H&N forum. 

    To find out about Rachel just click on her name  (under her picture).

    To get more response to your questions you should start a new thread.

    Matt

  • lornal
    lornal Member Posts: 428
    #29
    rwjw1 said:

    pegtube

    what happened to your throat  after 12 or 6 years after treatment.what caused the problem.i had throat cancer 2 years out.do i have to worry about getting a peg tube.

    peg tube years out

    Appearently, radiation is the gift that keeps on giving.  Doesn't happen to everyone.  In my case, radiation scar tissue is causing a stricture in my esophagus, making it difficult or impossible to swallow.  I was getting dehydrated, not getting proper (or anything close to it) nutrition, and couldn't take some of my medication anymore.

    The peg tube was put in to address these issues - and after one week - while still a bit sore, I am feeling so much better.  I had a sore throat for 15 months, but is now once again, manageable with Aleve.

    In addition to swallowing issue, my vocal cords have also been affected by the scar tissue.  Working on that with an ENT.

    Keep this in mind the next few years if you notice you can't swallow or you start getting hoarse.  It took me a long time to catch on.

     

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #30
    rwjw1 said:

    pegtube

    what happened to your throat  after 12 or 6 years after treatment.what caused the problem.i had throat cancer 2 years out.do i have to worry about getting a peg tube.

    Rwjw,
    i dont know the answer

    Rwjw,

    i dont know the answer of that question, lots of things have happened to me since nasophyregeaal carcinoma stage 3 13 yrs ago, alot of which have not happened to others.  I would say that radition does have side effects that dont show up right away.  Funny teeth they said i would lose with in 6 months, i didnt lose one for 8 yrs.  what seems to have happened to my swallowing is 1) scar tissue has built up in my throat allow for very short open period which was causing food to back up in throat and eventually forced down wind pipe and into lungs.  Last Christmas i developed Aspiration Pnuemonia and a peg tube was inserted it had been going on for long time my oxygen level was 72 and my lungs were full, all cleaned out now, can eat very little and drink water and coffee but other wise the tube, positive is that i lost alot of weight and when put on Ensure plus for nutrition inlost alot of BMI so i have been fighting the battle of bulge and right now its in control( only silver lining i can find).  I dont want to tell you unnecessary things, talk to your doctors and let them tell u what you could or could not face, other than teeth, 13 years ago they didnt know!

     

    good luck, God Bless and stay positive!

    Rachel 

     

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #31
    rwjw1 said:

    pegtube

    what happened to your throat  after 12 or 6 years after treatment.what caused the problem.i had throat cancer 2 years out.do i have to worry about getting a peg tube.

    Rwjw,
    i dont know the answer

    Rwjw,

    i dont know the answer of that question, lots of things have happened to me since nasophyregeaal carcinoma stage 3 13 yrs ago, alot of which have not happened to others.  I would say that radition does have side effects that dont show up right away.  Funny teeth they said i would lose with in 6 months, i didnt lose one for 8 yrs.  what seems to have happened to my swallowing is 1) scar tissue has built up in my throat allow for very short open period which was causing food to back up in throat and eventually forced down wind pipe and into lungs.  Last Christmas i developed Aspiration Pnuemonia and a peg tube was inserted it had been going on for long time my oxygen level was 72 and my lungs were full, all cleaned out now, can eat very little and drink water and coffee but other wise the tube, positive is that i lost alot of weight and when put on Ensure plus for nutrition inlost alot of BMI so i have been fighting the battle of bulge and right now its in control( only silver lining i can find).  I dont want to tell you unnecessary things, talk to your doctors and let them tell u what you could or could not face, other than teeth, 13 years ago they didnt know!

     

    good luck, God Bless and stay positive!

    Rachel 

     

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    #32
    hwt said:

    Rachel

    Happy to see you moving forward and on to a new adventure. 

    God Bless,

    Candi

    Thanks Candi how r u?
     
    rach

    Thanks Candi how r u?

     

    rach

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