when to remove peg tube

robinleigh
robinleigh Member Posts: 297
in Head and Neck Cancer #1
Andy has had his peg tube for 10 months. It doesn't cause any problems for us and most days he uses it to get 2 additional cans of food for a calorie/protein/vitamin/mineral boost. He is still in chemo so we are hesitant to remove it since there are days he doesn't have such a great appetitie. It gives us comport to know it's there for a back up plan. It's just that we also wonder if it might make him feel a bit of freedom and some "normalcy" to have it removed. I would have to nag at him more to get those extra calories in. Andy thoughts?

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
    When it stops providing benefit
    Certainly not while still on chemo and certainly not until there is reasonable evidence to believe the cancer has responded to treatment. As a benchmark, perhaps after your first post treatment scan in which nothing is found. For the present, he is managing the day to day discomfort and deriving benefit.
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #3
    Keep it for now
    Robin,

    I would suggest that Andy keep the Peg in for some time yet. I know exactly what you mean about the feeling of freedom after mine was removed. I had to prove to the Oncologist that I was able to maintain my weight without honestly using the Peg for several weeks before he scheduled my removal of it.

    You mentioned that Andy is still in Chemo, I would wait and see how he reacts after the final treatments. He might not like the extra nagging if it got to that point.

    My Best to Both of You and Everyone Here
  • CajunEagle
    CajunEagle Member Posts: 408
    #4
    Don't be in a hurry......
    Andy needs to show the ability to slowly gain weight without the use of the tube at all. This may take a few weeks to a few months after all treatment is completed, and he'll know when he's fed up with dealing with the tube. It's a massive motivator to force himself to learn to only take in nutrition orally.......at least it was for me. But please, please don't nag, especially during this time span of treatment being completed. It took me lots of therapy to re-learn to both talk and swallow after my treatment, and hopefully Andy won't have to go down that horribly bumpy road, but the feeling of some form of "normalcy" will return. It seems (at least in my case) to take so much longer than what was predicted......so just take your time.....nature and medication will do the trick.

    Larry
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    Hi Robin
    In Andy's case this is a tough choice. On the one hand, leaving it in probably feels like sitting around waiting for the other shoe to fall. On the other hand, taking it out probably feels like losing a lifeline. I'm not sure this is a choice best made by anyone but you and Andy. You two might sit down and discuss various scenarios between yourself and see where he's at, in terms of reinsertion if things go poorly on down the road. Given his good response to this last treatment protocal, of course that could be way on down the road.

    What I'm trying to say, and doing a poor job of saying, is that there isn't likely a right and wrong way to decide this, there is only what you two want to do. Wishing you both the best.

    Pat
  • nwasen
    nwasen Member Posts: 235 Member
    #6
    PEG
    My radiation doc was very against me getting a PEG tube until I lost 30 some pounds in three weeks. I went from 134 to alittle over 100 pounds. I never quite got why he didn't like the PEG until later. I had mine put in at about week 4 of my 7 weeks of radiation, so sometime in November, beginning of the month...
    I became very dependent on it. I even poured my liquids into it instead of using my mouth. On my birthday, Jan. 7th, I finally had my taste buds coming back and bought some cream of potato soup. After choking on a small piece of potato I decided to give up and just keep the tube.
    About a week later I found myself asking what the hell was I thinking?! I called my local ENT and he got me in with a speech therapist where I learned how to swallow again and had two months of electrode therapy to help rid my throat of scar tissue. I also had two stretches. I had the tube out in mid July....
    So my advice, and this is just my own opinion of course, is if your throat doesn't hurt, start eating and at least drinking as much by mouth as you can. I think I had a real love/hate relationship with my tube.
    I now eat pretty much whatever I want with just a few exceptions....just keep trying and you will get there!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    Robin
    I always say that if you aren't actively fighting, and you can get enough calories, by mouth only, with no use of the peg for 30 days, and maintain or gain weight doing that for thirty days, then removal can be considered. That is what my medical team told me, and that is what I did. So, I think that Andy should keep it for the time being. I am sure he is craving normalcy! I remember how awful I still felt at 10 months out. It was over whelming. That peg tube was kinda a PITA, but it did save my life.

    I just had a thought, what kind does he have? Is one one with a tube/hose sticking out? What about a low profile one? Like the Mic-key button?? That really made me feel a whole lot more closer to normal. It is very flat, and basically undetectable under clothes, and you don't have that hose pulling on your belly. Soooo much more comfortable. You can look on the HNC Superthread for visuals if your don't know what I mean. I posted a photo of my first one with the long hose, and a picture of the button. I think this would be the best of both worlds.
  • michdjp
    michdjp Member Posts: 220
    #8
    nwasen said:

    PEG
    My radiation doc was very against me getting a PEG tube until I lost 30 some pounds in three weeks. I went from 134 to alittle over 100 pounds. I never quite got why he didn't like the PEG until later. I had mine put in at about week 4 of my 7 weeks of radiation, so sometime in November, beginning of the month...
    I became very dependent on it. I even poured my liquids into it instead of using my mouth. On my birthday, Jan. 7th, I finally had my taste buds coming back and bought some cream of potato soup. After choking on a small piece of potato I decided to give up and just keep the tube.
    About a week later I found myself asking what the hell was I thinking?! I called my local ENT and he got me in with a speech therapist where I learned how to swallow again and had two months of electrode therapy to help rid my throat of scar tissue. I also had two stretches. I had the tube out in mid July....
    So my advice, and this is just my own opinion of course, is if your throat doesn't hurt, start eating and at least drinking as much by mouth as you can. I think I had a real love/hate relationship with my tube.
    I now eat pretty much whatever I want with just a few exceptions....just keep trying and you will get there!

    What kind of electrode
    What kind of electrode therapy did you have? I have been reading old posts regarding swallowing issues for my dad who is 16 weeks since treatment and like you mentioned he also chokes on the potatoes in the soup. When I called a facility for the vital stem procedure he said this does not work if there is scar tissue so I would need a throat dilitation first. So far we have only been to speech therapy which did not seem to help. He can swallow liquids without choking but that is about it.

    Thanks for any advice
    Michelle

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