Feeding tube or no tube?

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  • TVF1943
    TVF1943 Member Posts: 2
    #42
    Feeding Tube

    I have left neck cancer that migrated from my tonsils to my lymph.  It was about two thirds through my 33 radiation treatments when swallowing became difficult.  I fought getting the tube because I was still in some kind of denial.  I waited until I was so weak that I had to do it.  It wasn't very smart on my part because the last trimester of radiation was difficult and the month after radiation was concluded was very difficult.  I likely made my recovery more difficult by not being as strong as I might have been had I been providing myself sufficient nutrition.

    Since then I've had a radical neck dissection and I've learned radiated tissue combined with surgery is slow to heal.  I still have the tube as swallowing, trismus, only one operational vocal chord are all post surgery issues. I could not be surviving without the tube. I may be dreaming of a burger, but the reality is the tube.

  • TVF1943
    TVF1943 Member Posts: 2
    #43
    Tim6003 said:

    No right or wrong in my opinion.....

    I'ts between you and your team of docs. 

    I had a tube before treatments started, not only did I lose 70lbs I still got taken to the "special room" and got in trouble with my doc and team bc I was not staying nourished.  Jeez, looking back I think I was a bad patient, but not on purpose.

    The tube was a lifesaver for me, no doubt.  But the first two weeks I had the peg tube (stomach) I was in pain and it just seemed my stomach did not want that darn thing in me and threw everthhing back up...

    The thing I don't like about the argument to "get the tube only in an emergency" is if the tube does not "set well" with your body and your body / stomach wants to fight back, then the emergency is just exasperated by the circumstances.

    I still did my neck exercises and I still swallowed water (tough but I did) ...and heck, with all the mucus who could not continue the swallowig exercises anyway (unless of course you carry a spitune (sp) with you everywhere you go.

    It does however sound as if your husband is doing well and aside from taste, he can still swalllow soft foods and such...me, I was liquid only and that was hard due to pain.  Eventually I could only swallow water and all my calories and protein went via the tube.

    I do pray all goes well and he continues as he is...

    Tim

    Mucous

    What's the deal with mucous?  This is my second round of it. It seems to go away after some time, but I'm not sure of why it happens?

    Hey, I think a spittoon is a great idea.

  • George_Baltimore
    George_Baltimore Member Posts: 303
    #44
    One vote FOR the tube

    I resisted getting one put in before treatment.  It was my hardheaded belief that I could keep on swallowing food.  WRONG!  Some people can, I couldn't.   The day after it was put in, I was hospitalized for a week because I was rundown.  Had the tube taken out at the end of the year.  That was fine until I started having swallowing problems a couple years later.  I voluntarily had one put back in because I wasn't getting enough hydration.  Then I had surgery for the mandible necrosis in 2011.  Since I already had the tube in, that was made a little easier.  Unfotunately, I still can't swallow so I am still strictly on the tube.  You kinda get used to it after awhile.  Even if your husband never uses it, I would say go ahead and have it in place just in case.

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #45
    It can change very quickly!

    I started out wanting a PEG. After meeting with my team, they were insistent I would be fine. For the first three weeks I was. Then the bottom fell out. I had nausea from the chemo, thrush, mucositis, mouth sores, burned out throat... I started dropping weight rapidly. By the end I could barely swallow a sip of water. I'm actually feeling worse now than I did last Wednesday when I rang the bell. I know I will feel this way for at least 2 weeks ~sheesh!~ Add to that soreness from the procedure, enough mucous to fossilize a dinosaur and it makes for one happy guy... NOT! ~lol~ 

    It was a goal not to get a PEG during treatment and I accomplished that goal (by hours). Today was the first time I did a feeding and it's a pretty weird experience, I was able to get a can in no problem. I'll be ramping up the feedings until I get to 2500 calories a day. Hopefully, the rawness in my throat will subside and I'll be able to start eating more liquids and soft foods. 

    I'm keeping records of several things and my team gets an email every day. Temperature, weight, amount of food and liquid etc. All I know is I'm looking forward to turning the first corner! 

    "T"

  • Charmin50
    Charmin50 Member Posts: 4
    edited December 2019 #46
    Roar said:

    No feeding tube

    I didn't want a feeding tube but had 40 lbs to play with- I started out at 195 and when treatment was finished I weighed 160- I didn't want anothe rproceedure. I lost most of the weight over the last 10 treatments- I had a similar regiment. If he can make it without the tube go for it- if he is skinny I would start planting the seed in his head that he will need it. I was overweight - the cancer diet was the only diet that helped me lose weight. Magic mouth wash did it for me. And some pain meds . 

    magic mouth wash

    So is this mouth wash the baking soda and water, or what?

  • Charmin50
    Charmin50 Member Posts: 4
    #47
    Skiffin16 said:

    Thrush...

    You know, one thing I have heard a lot of while my time on here is a high amount of people who have gotten thrush during treatment.

    I was not one...., I never had any issues with thrush....

    One thing also that I realized, I have never heard on anyone else doing what I was prescribe to do during treatment...

    I was told to rinse several times a ay, with a solution of a few tablespoons of hydrogen peroxide, a teaspoon of salt in about a half glass of water.. Sip, swish and spit....(don't swallow)..

    I just googled it, and actually see that hydrogen peroxide solutions are recommended to treat and prevent thrush, LOL...

    So you that duffer with it, or as a possible preventive, do some research and see if it might be something to it...

    Of course you might wanna run it through your MD's first... But like I said, one of my MD's were the one that prescribed me doing it.

    JG

    thrush

    I was doing the swish, no HO though. But I'm also on steroids - a common cause of thrush. But this weekend was a booger - lost 8 pounds from Thursday to Monday because water, in any form, tastes like dirty, oily hair. So I'm considering the tube. Any ideas on yea or nay?

    Thanks,

    Charmin50

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