Tube-less in Oklahoma

just back from a morning of doc appointments and got an unexpected bonus -- PEG tube is gone!

Hubby has not used the tube since 2/10but gastro doc wanted to wait another week or two to take it out.  Had appointment with ENT this morning and got a good report. Throat/tonsil area looks good. Weight up about 6 pounds (would have been more except I discovered the two heavy duty walkie-talkie type cell phones in his pocket and "cheated" him out of a couple more pounds).

For the new folks, hubby was stage 3 left tonsil HPV +. Diagnosed 4/24/12 started tx 5/30/12 finished 7/19/12.  35 rads, 2 Cisplantin chemo (wassupposed to have 3 but too weak for last one).  Lost about 40 pounds and only had about 15 to lose, hospitalized for 6 days,dehydrated and c diff infection. We questioned many times whether he would live thru the tx but he did.  The recovery was slower than we would have liked but he is cancer free, his hair has grown back, his taste buds are about 75 percent, saliva about 50 percent and the PEG tube is history.

We want to encourage all of you in different stages of this journey -- you will think you can't go on but you can. Like that great philosopher John Wayne said -- Courage isn't the lack of fear, it's saddling up and riding anyway.

To all you courageous warriors -- God Bless and God Speed.




  • Grandmax4
    Grandmax4 Member Posts: 723

    news, happy your husband is doing so well..

  • phrannie51
    phrannie51 Member Posts: 4,716

    To this day, getting that tube out has won the prize for normality returning.....even tho I didn't use it for weeks and weeks, it was still in the way....and a constant reminder.  Six lbs is great!!  I've only gained back 9 or 10 since treatment ended, so getting it back on is a slow process.  He's doing so good on the taste and saliva, too....I'm jealous! 


  • Laralyn
    Laralyn Member Posts: 532
    Congratulations! I still

    Congratulations! I still remember how great that day was. :-)

    The healing will be slow but steady over the upcoming months. Remember to celebrate every day together as precious!

  • Montreal
    Montreal Member Posts: 7

    Congratulations - You did great

    I had my Peg pulled out last week. There was happiness it was overwhleming.

    The only things left, my jaw still hurts when I eat. Hope this will be gone soon.

    Waiting for the tastes to come back.


    All the Best to You


  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    Great news, I know how much

    Great news, I know how much better I felt when I got mine removed. I was actually diagnosed 2 days after your husband but didn't start treatment until 6-11-12 and finshed 8-3-12. I also had 35 rads and 3 Cisplatin, I was HPV+, unknown primary. I am so glad things are looking up for you guys. It is tough and I still struggle with things, still losing weight but I had some to lose. I am thankful for every day I have, would like to be back to the old me, but I know that is probably never going to be so am learning to accept the new me.



  • CivilMatt
    CivilMatt Member Posts: 4,698 Member
    another PEG is popped



    Nice to hear (or  hair) he is doing well, recovery does continue to get better.