Four month check up.

wmc
wmc Member Posts: 1,804
in Head and Neck Cancer #1

Well I had my four month check up with my ENT oncologist, and all looks good in the throat and neck. Have a sore spot in my neck we'll keep a close watch on but think it is just a sore muscel, and I'm getting some feeling back. No scans needed yet but he did write NED on my report. I'll go with that.

I guess we say phrases and never really think about them to much. I remember thinking when I was told that the only way I could survive the surgery was if they took out my voice box and had a treach put in. I thought, I can live with that, but really it was I can't live, without that. I know the odds are one in four the cancer will come back but I did not need radation so the 75% it won't is what I have to think about.  Had to have my TEP changed, again. Just had it changed last month because of leaking. Now it seems to be to long and they don't want to wait two more months and have more asperating spells. Last one I ended up in the ER 220 miles away. We have a great hospital in town, but they have not really delt with neck breathers and TEP's so I'll drive the four hrs when needed. If The TEP comes out then I go local and they can put in the cathiter, then I drive four hrs to get it replaced. I have the spare part and have someone one hour away in an emergency could put it in the next day as a favor. Sorry for the rambeling but the acid reflex has been real bad the last seven days and causing some small problems. Wow I really miss the sphincter muscle keeping things down.

Have a great tomorrow;

Bill

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Acid reflux

    are you on a proton pump inhibitor?  The first day in my life I ever had reflux was the day after my surgery.  And the reflux has continued every day since then, for 15 years.  Unless I take a proton pump inhibitor (I'm on famotidine) daily, I am miserable.  On it, i am fine.

     

    Pat

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Whoo Hoo on the NED!!

    Love hearing those words!!  You can bask in them for some time!

    My mom had trouble with her TEP in the beginning (leaking, clogged, etc), but the finally figured out that by snipping a little off the end she could wear the same one for months.

    p

  • donfoo
    donfoo Member Posts: 1,773 Member
    #4
    Great News!

    Glad to hear the report. Not sure of your HPV status but HPV+ patients are much closer to 90% success. Managing the side effects are always a drag. You just got to deal with them and remind yourself of how lucky you are to be able to have the opportunity to deal with them as alternate realities could be far less appealing.

    Don

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    ODDS Have It...

    Where's Matt when you need him..., LOL...

    X2 on the Acid Reflux, my drug of choice (Rx), Protonix...

    John

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    100% behind you

    Bill,

    Good check-up, you are 100% NED!  I tend to look at the odds a little more personally.  When I was diagnosed, I was 100% cancer and (so far) after treatments I am (dare I say it) 100% NED.  I either have cancer or I don’t.  The odds of even getting my type of cancer was low, but lucky me I beat the odds and acquired it.  Believe me, this stuff scares me and I would like a “do over”, but I will take it as it comes and somehow face the consequences.   Now, it is time to take my proton pump inhibitor and go get a load of sand in the truck, because it is 100% snowing and I must drive.

    Matt

  • wmc
    wmc Member Posts: 1,804
    #7
    Skiffin16 said:

    ODDS Have It...

    Where's Matt when you need him..., LOL...

    X2 on the Acid Reflux, my drug of choice (Rx), Protonix...

    John

    Protonix

    Mine too....... Thanks

    Bill

  • wmc
    wmc Member Posts: 1,804
    #8
    longtermsurvivor said:

    Acid reflux

    are you on a proton pump inhibitor?  The first day in my life I ever had reflux was the day after my surgery.  And the reflux has continued every day since then, for 15 years.  Unless I take a proton pump inhibitor (I'm on famotidine) daily, I am miserable.  On it, i am fine.

     

    Pat

    Thanks

    Yes I take  Protonix and It helps. Just been real bad lately.  Thanks Pat.

    Bill

  • wmc
    wmc Member Posts: 1,804
    #9
    phrannie51 said:

    Whoo Hoo on the NED!!

    Love hearing those words!!  You can bask in them for some time!

    My mom had trouble with her TEP in the beginning (leaking, clogged, etc), but the finally figured out that by snipping a little off the end she could wear the same one for months.

    p

    Thank you Phrannie

    Thanks Phrannie. My first one just wore out due to my AR. It burns them, but it is better than my throat being burned.LOL.  The second one was just over 2mm long so it had to be replaced, touching the back of my throat when I talked or ate. It is much better now and should last three to six months.

    Thanks

    Bill

  • wmc
    wmc Member Posts: 1,804
    #10
    donfoo said:

    Great News!

    Glad to hear the report. Not sure of your HPV status but HPV+ patients are much closer to 90% success. Managing the side effects are always a drag. You just got to deal with them and remind yourself of how lucky you are to be able to have the opportunity to deal with them as alternate realities could be far less appealing.

    Don

    You're correct:

    You're right that dealing with them is better. From all the tests I don't have any HPV. 

    Thanks Don

    Bill

  • wmc
    wmc Member Posts: 1,804
    #11
    CivilMatt said:

    100% behind you

    Bill,

    Good check-up, you are 100% NED!  I tend to look at the odds a little more personally.  When I was diagnosed, I was 100% cancer and (so far) after treatments I am (dare I say it) 100% NED.  I either have cancer or I don’t.  The odds of even getting my type of cancer was low, but lucky me I beat the odds and acquired it.  Believe me, this stuff scares me and I would like a “do over”, but I will take it as it comes and somehow face the consequences.   Now, it is time to take my proton pump inhibitor and go get a load of sand in the truck, because it is 100% snowing and I must drive.

    Matt

    100% behind me:

    Yes Matt I have to agree. I eithor have it or I don't. You can't, kinda have it. Take care and thanks.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #12
    Bill, congrats on the NED!! 

    Bill, congrats on the NED!!  i will never get tired of hearing my CSN family saying that.  on the tep, mine has come out one time but when i first had the tep put in they gave me a tube like thing to put in the tep hole to keep it open until i could see them.  that's what we did.  its just a rubber tube thingy about 2 feet long.  mine have been lasting me at least 6 months, even the docs were surprised they last so long.  on the odds of the cancer coming back, concentrate on the odds that it WON'T, that is easier.  Like you, i also miss the sphincter muscle to keep stuff down.  that is the biggest problem i have right now as far as I'm concerned, nothing goes down immediately when I swallow, it may take 10 min. for it to go down and stay down.  makes for very slow eating and drinking.  i deal with it tho.  anyway, CONGRATS!! and i'm glad you're doing so well and i hope the ar comes under control.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    #13
    debbiejeanne said:

    Bill, congrats on the NED!! 

    Bill, congrats on the NED!!  i will never get tired of hearing my CSN family saying that.  on the tep, mine has come out one time but when i first had the tep put in they gave me a tube like thing to put in the tep hole to keep it open until i could see them.  that's what we did.  its just a rubber tube thingy about 2 feet long.  mine have been lasting me at least 6 months, even the docs were surprised they last so long.  on the odds of the cancer coming back, concentrate on the odds that it WON'T, that is easier.  Like you, i also miss the sphincter muscle to keep stuff down.  that is the biggest problem i have right now as far as I'm concerned, nothing goes down immediately when I swallow, it may take 10 min. for it to go down and stay down.  makes for very slow eating and drinking.  i deal with it tho.  anyway, CONGRATS!! and i'm glad you're doing so well and i hope the ar comes under control.

    God bless you,

    dj

    DJ Thank you so much...

    Thanks;

    I also have that big brown tube. A 16" PVC Catheter to plug the hole if the TEP comes out. I was told it can close up in six hours. Just hope I never have to use it.  I went down to our 911 dispach and let them know I'm a neck breather and Laryngectomee and might not be able to talk if I call 911. They now have me on file If I ever need to use them they will know and alert the paramedics and or amblance. 

    Thanks and have a great day.

    Bill

  • j4mie
    j4mie Member Posts: 218
    #14
    Good news!

    Always so nice to hear that someone has walked away from an appointment hearing "NED"!! Congrats!

    Jamie

  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    Hi Bill

    Be careful of the aspiration, I been in the hospital twice because of it. Even now that I can’t swallow it still finds a way into the lungs and gives me a lot of pain mostly at night while sleeping. It is hell what we have to go through but I tell you the truth it is worth it. When I have my grandchildren and get to be a part of their life it is worth the pain of being there for them. When I walk in and they run to papa with their arms up in the air for me to pick them up, it is worth it. Keep focus and keep positive you will be amazed at what your brain can tell your body to do.

    On the acid reflex I learned to sleep on a 35 degree angle just in case of reflex, it does help a lot. Also there are a lot of foods that curse reflex I learn to stay away from them at night. Your body is different so you just need to figure out what is giving you reflex and what don’t.  

    God Bless

    Hondo

     

  • hwt
    hwt Member Posts: 2,328 Member
    #16
    Hondo said:

    Hi Bill

    Be careful of the aspiration, I been in the hospital twice because of it. Even now that I can’t swallow it still finds a way into the lungs and gives me a lot of pain mostly at night while sleeping. It is hell what we have to go through but I tell you the truth it is worth it. When I have my grandchildren and get to be a part of their life it is worth the pain of being there for them. When I walk in and they run to papa with their arms up in the air for me to pick them up, it is worth it. Keep focus and keep positive you will be amazed at what your brain can tell your body to do.

    On the acid reflex I learned to sleep on a 35 degree angle just in case of reflex, it does help a lot. Also there are a lot of foods that curse reflex I learn to stay away from them at night. Your body is different so you just need to figure out what is giving you reflex and what don’t.  

    God Bless

    Hondo

     

    Bill

    Congrats on the NED! Your positive thinking will take you far :-)

  • jim and i
    jim and i Member Posts: 1,788 Member
    #17
    Yeah, NED
    Debbie
     

    Yeah, NED

    Debbie

     

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