Base of tongue cancer

charlie1940
charlie1940 Member Posts: 4 Member
in Head and Neck Cancer #1

Learned of cancer August 2017, began radiation, chemotherapy and completed treatment October 23, 2017. A feeding tube was placed and was removed 18 months later. I had no appetite nor was food pleasurable to me. Ive existed on fruit and vegetable smoothies and Boost since. Recently I have developed an appetite and have started whole foods and find pleasure in eating. For those without hope please know that this can happen to you.

Comments

  • Larry449
    Larry449 Member Posts: 51 Member
    #2

    Well… You gave me one answer before I even made my post, but I didn’t see it until after I posted mine!

    Larry449

  • Larry449
    Larry449 Member Posts: 51 Member
    #3

    Me again! How did you handle a peg tube for 18 months? I’m at a little over four months and it’s driving me nuts! It itches. It pulls (or feels like it). I’m constantly worried about snagging it on something… I’d really like it gone!

    Larry

  • charlie1940
    charlie1940 Member Posts: 4 Member
    #4

    larry, Ive had two feeding tubes. The first was in 2003. I had Guillain Barre and was paralyzed from chest up and then with cancer. Combined, I used a tube for 25 months. My advice to you is to really, really keep the area of the incision clean with soap when you shower and spray alcohol on it periodically. You can buy a G tube holder for $14.00 on Amazon. This will help keep anxiety under control.

    As for the itching, use a little Sarna lotion on it. It’s also available on Amazon. My empathy is with you. I experienced what you are going through so don’t hesitate to use my experience.

  • Larry449
    Larry449 Member Posts: 51 Member
    #5
    https://csn.cancer.org/discussion/comment/1691813#Comment_1691813

    Charlie, I actually had problems getting my g tube.. the first tube ballon popped 10 days after I got it. The second one was probably ok but it looked very loose to me and I panicked, thinking that balloon had also deflated, so that one was also removed. It actually looked good and probably should have just been left in… So the third was a balloonless one, had kid of a reverse umbrella thing to keep it secure. I left the cath center confident in this one until a few days later it leaked! Profusely, thru the stoma around the tube… Back to the cath center where they put in a G-J tube, with the J part going thru my stomach into the small intestine, (jejunal). All they told me was that the feed would go into the J port, just not as much. When I asked “how much” I was told “Your home nurses will know”. Well, they didn’t! All this was within a period of just less than four weeks, and before I actually needed it. When I did get to the point I was going to need it, I called and asked if I could just go ahead and use the G port (directly into the stomach like a regular peg). They said yes, unless it starts to leak! Fortunately it hasn’t leaked. It does seep a little and I get some crusty residue around the tube. I clean it alternately with peroxide or Mupirocin ointment, depending on how it looks… For the first tubes I had been taping the loose tube to my chest to keep it from flopping around loosely. The doctor told me I shouldn’t tape it because it pushed the pad side ways (?)… not to mention what the tape was doing to my skin! I still didn’t like the tube just hanging loose so I did purchase one of the g tube holders you mentioned. I don’t wear it as intended because I’d have to coil the tube too tightly to keep it in, so I wear the belt a little lower and put the end in the pocket to hold it still.. (think watch pocket.). The G-J tube was put in on the 16th of August and haven’t been in contact with the cath center since… Hopefully, the next time I go in, it’ll be to have the tube removed..

    So that’s where I am on this New Years Eve, 2021/22. I’m not one for partying on nye, but this isn’t exactly what I’d like to be doing either.. Next year will be better.. I hope, for all of us!

  • charlie1940
    charlie1940 Member Posts: 4 Member
    #6

    Happy New Year Larry! Maybe, just maybe this year will go just the way you want it to.

    i didn’t experience the frustration you write about. Once I became proficient in its use I was ok. During my first use of one it came out so I pushed back in. That gave me a bit of confidence. You seem to have all your wagons in a circle in use and care but still have a bit of frustration. I too was frustrated initially, how can you not be, but every negative thought I had about my condition was flat out wasted effort. I would focus on the positive in my life and cast out the negative. It worked then and still does. I’m not in your body but this worked for me. It was by no means easy. Have you finished treatment?

Discussion Boards