PEG Tube- Need tips

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jkinobay
jkinobay Member Posts: 298 Member
edited December 2022 in Head and Neck Cancer #1
Difficult or painful to install? To maintain? To get used to? Do they effect your ability to sleep or eat normally when you can? My Docs want me to put one in week 1 or 2 of the 7 weeks of IMRT just in case needed. I am going in with a normal diet, appetite, perfectly healthy and about 25 pounds overweight. Do you think I really need one?
Thanks...JK

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  • vinny59
    vinny59 Member Posts: 1,036 Member
    #2
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    Hi, I never had to put it in, I did loose close to thirty five pounds though. I think it would not hurt to have it done. Between the Chemo and Rad. I could not even get water down. For me everything tasted so bad. If I had the tube, I think I would not have been so dehydrated. My doctor took the wait and see attitude.Everyone is different I would follow the direction of your doctors, they know best. Stay well
  • George42
    George42 Member Posts: 5 Member
    #3
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    Listen to the docs! My husband & I took the wait and see approach, and it backfired. He got to the point of dehydration (5 day hospital stay) and a two week delay in getting the tube in because his white blood cell count was too low. They refused to do the procedure at that point. Finally, WBC count was up with meds & they inserted the tube, but not before he was forced to take IV nutrition through his veins twenty hours a day for about three weeks. George lost about 25 lbs. He was not overweight to begin with. Everyone is different, but as a precaution you probably should get one. George's peg tube is easy maintenance as far as cleaning. At first I did it for him, but now he does it himself. He can also hook it up for a feeding on his own now. As far as the procedure, there was pain for a few days following. He was given heavy meds (Morphine and others). He was in the hospital for two days. He got used to it quickly. It doesn't interfere with eating normally. If you can, eat and drink as much as possible. He had no appetite and everything tasted either like metal or cardboard. He has had the tube since 03/07 and still uses it daily, although he is tired of it as you can imagine. He would much rather be eating enough, but after the bilateral neck dissection, eating became more difficult. It was improving after he finished with radiation and chemo. The surgery was definitely a setback. Bottom line: it is a life saver.

    Best of luck to you JK,

    George42's Honey
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
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    Good answers from these folks, especially the admonishment to follow the docs' advice.

    I cannot speak to the pain of installation, as I was in the arms of Morpheus at the time, but I can tell you, jk, that maintenance is not a major issue at all. The nursing staff will likely take you through the steps for feeding yourself through it, and for keeping it clean. Since it doesn't sound like yours will be there for a long period of time, you won't have to face the re-installation possibility (which is painless).

    It will not impact your ability to eat, nor your ability to sleep, if I am an example. In fact, the biggest worry once it is in place as that it becomes easier and faster to get nutrition through the peg tube than it is to eat (:)): type A pesonalities might actually LIKE this!!!

    My advice would be to listen to the docs, as others advise, and not to worry about the tube beyond that. Beyond that, I would simply suggest that you NOT grow accustomed to it: always choose not to feed through it if you can avoid it.

    Best wishes!
  • jkinobay
    jkinobay Member Posts: 298 Member
    #5
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    Big thanks to all of you (George42, Vinny59 and Soccerfreaks) for your input. I will take your advice. Be well............JK
  • jenimart
    jenimart Member Posts: 1
    #6
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    if you are going to have radiation to the neck, you may have difficulty swallowing and may need the peg for additional nutrition if you arent able to eat enough.
  • gmommy
    gmommy Member Posts: 2 Member
    #7
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    Peg tube was a lifesaver. It didn't hurt to be put in at all. It was a little weird getting used to. You suddenly have this thing hanging down from your stomach. I tucked my tube up into my cleavage/bra. Only once did it come open. Looked like I was nursing and leaked. Anyway. It probably saved me. By the second week of radiation I didn't want to even eat or drink. Once the tastebuds go it feels pointless. Just make sure to keep the tube flushed after using. And also make sure to use the alcohol wipes around the opening to the tube to avoid infection at first. I did but still developed some redness. After six months I was able to have the peg pulled and was really worried how that would feel. It was painless. Didn't even realize the nurse was done when she pulled it.

    If you can still eat and drink during treatment, do so. But if the time comes when or if you are unable. You will be thankful you have that peg tube. It helps you keep up your strength and get the nutrition you need to battle the effects of radiation and chemo. Good luck to you! Stay strong!
  • tracy_csn
    tracy_csn Member Posts: 15 Member
    #8
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    I had a Peg tube for 6 mos. Numerous docs and survivors had recommended it to me. Now, I would recommend it to anyone having neck related chemo. I had both the Peg and medi-port put in at the same time while I was under. Even with Peg, and pouring in 3500 calories a day, I lost ~ 35 lbs! For me the radiation burned all taste, all... everything tasted like cardboard or woodchips, and I could not make myself swallow anything, even after it was not painful. So I used the tube until most taste returned.
    Bottom line, I highly recommend having the tube.
  • jkinobay
    jkinobay Member Posts: 298 Member
    #9
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    tracy_csn said:

    I had a Peg tube for 6 mos. Numerous docs and survivors had recommended it to me. Now, I would recommend it to anyone having neck related chemo. I had both the Peg and medi-port put in at the same time while I was under. Even with Peg, and pouring in 3500 calories a day, I lost ~ 35 lbs! For me the radiation burned all taste, all... everything tasted like cardboard or woodchips, and I could not make myself swallow anything, even after it was not painful. So I used the tube until most taste returned.
    Bottom line, I highly recommend having the tube.

    Thanks to all. I have taken your advice and will have the PEG tube installed the 2nd week of Rads.............9-21........wish me luck....and thanks so much for your insight...........Hoping you are well, and stay well.............JK
  • rdbaughman
    rdbaughman Member Posts: 35
    #10
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    Peg & Port
    I had the Peg Tube ( Feeding ) & Chest Port ( IV )installed before I started the Radiation & Chemo. It was the best decision I ever made. I can't argue enough on the Pro's & have no Con's at all. I was grossly over weight when I was diagnosed with my throat cancer so I could stand to lose some weight but I never in my wildest dreams thought I'd lose 90 pounds. I'm now at a comfortable 180 pounds @ 5'7". Still 20-30 pounds heavy but I feel good at this weight. As far as the Chest Port goes, I love it. It's better than having your body drilled with holes from seringes ever time that have to draw blood. I was given a lidocane creme to apply to the port 30-45 minutes prior to them accessing my port so you feel hardly a slight pinch when the insert the needle for a blood draw or for a Chemo session.
  • donnahamblin
    donnahamblin Member Posts: 47
    #11
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    Highly Suggested!
    It saved my husbands life. He finished rads 2 weeks ago and has not been able to eat for 43 days now. Everything tastes like metal he says. Still tube feeding and we both can't wait till he can eat again:-)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
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    rdbaughman said:

    Peg & Port
    I had the Peg Tube ( Feeding ) & Chest Port ( IV )installed before I started the Radiation & Chemo. It was the best decision I ever made. I can't argue enough on the Pro's & have no Con's at all. I was grossly over weight when I was diagnosed with my throat cancer so I could stand to lose some weight but I never in my wildest dreams thought I'd lose 90 pounds. I'm now at a comfortable 180 pounds @ 5'7". Still 20-30 pounds heavy but I feel good at this weight. As far as the Chest Port goes, I love it. It's better than having your body drilled with holes from seringes ever time that have to draw blood. I was given a lidocane creme to apply to the port 30-45 minutes prior to them accessing my port so you feel hardly a slight pinch when the insert the needle for a blood draw or for a Chemo session.

    De-Ported Pike Man...
    I had the port, the sting of the needle only lasted a few minutes, but like you said it's much better than not having it. Plus they can infuse the chemo through the pump at a faster rate.

    My MD left the port in for over two years, I guess through the greatest opportunity for recurrence... I'm three years post treatment, nearly anyways, another few months.

    BTW, nice northern you got going on there in that little jon boat.

    Best,
    John
  • KCP
    KCP Member Posts: 1
    #13
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    donnahamblin said:

    Highly Suggested!
    It saved my husbands life. He finished rads 2 weeks ago and has not been able to eat for 43 days now. Everything tastes like metal he says. Still tube feeding and we both can't wait till he can eat again:-)

    How long before your husband was able to eat

    Hi my husband finished all of his treatment 4 weeks ago.  Still has a problem swallowing water.  Just wondering how long it will take before he will be able to take food by mouth.  I know everyone is different, but haven't seen any post with any time frames.  He is still very tired and sleeps  a lot.  I know it takes time, just want to see little steps.  I keep pushing him (thinking I'm helping), but maybe I should just let him go at his own speed.  He had complications, was in the hospital for 3 weeks.  Had to have the feeding tube replaced 3 times.  So it could be part of the slow recovery.  Still has a very dry mouth, even with all the mouth rinses.  And the mucus, when does that go away.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #14
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    KCP said:

    How long before your husband was able to eat

    Hi my husband finished all of his treatment 4 weeks ago.  Still has a problem swallowing water.  Just wondering how long it will take before he will be able to take food by mouth.  I know everyone is different, but haven't seen any post with any time frames.  He is still very tired and sleeps  a lot.  I know it takes time, just want to see little steps.  I keep pushing him (thinking I'm helping), but maybe I should just let him go at his own speed.  He had complications, was in the hospital for 3 weeks.  Had to have the feeding tube replaced 3 times.  So it could be part of the slow recovery.  Still has a very dry mouth, even with all the mouth rinses.  And the mucus, when does that go away.

    kcp, this is a very old

    kcp, this is a very old post.  i'd suggest you start a new thread so people will see and answer your question.

    dj

  • MrsBD
    MrsBD Member Posts: 615 Member
    #15
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    Eating difficulty

    My treatment involved rad and chemo, but no surgery. I did not have a PEG tube, but do have a port. When I started to become dehydrated, I went to the cancer center and they gave me fluids through the port.  It is still hard for me to eat three months after treatment ended. I had acupuncture to help save my salivary gland function and never lost my sense of taste. Mostly there is a sore throat and incomplete swallowing where I need to swallow a second time with a sip of water in order to get the rest of the food down. Swallowing therapy has helped. When I finished my treatment, the staff said most people start to feel better in 4-6 weeks. The key word is "start"! Recovery takes a long time. Be patient with yourself.

  • MrsBD
    MrsBD Member Posts: 615 Member
    #16
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    A couple more things

    After reading your post again, there are two more things I'd like to add. The mucus stage is sooo annoying. It is finally getting better for me. Ask if you can use Mucinex at night. It helps. As far as sleeping, I probably slept 18 hours a day at one point. The doctor said it was normal and that sleep helps the body repair itself.

  • thennies61
    thennies61 Member Posts: 285
    #17
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    MrsBD said:

    A couple more things

    After reading your post again, there are two more things I'd like to add. The mucus stage is sooo annoying. It is finally getting better for me. Ask if you can use Mucinex at night. It helps. As far as sleeping, I probably slept 18 hours a day at one point. The doctor said it was normal and that sleep helps the body repair itself.

    They put my peg in during

    They put my peg in during surgery.Doctor felt better safe then sorry if I needed which I did during treatments.Never really bothered me much.It was pinned to my shirt at first then went onto amazon and bought a pouch for it.It wrapped around your stomach and the tube slipped inside it.Was very convenate even at work.I kept the tube until after my pet scan and the doctor pullled it out in his office.Alittle twitch but nothing to it.He wanted to check the first scan plus I had to start eating from the mouth and gain weight before he would pull it.But was glad that it was in to keep fluids in me for the time of treatments.

  • FWCranmore
    FWCranmore Member Posts: 1 Member
    #18
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    Has anyone who has a PEG tube ALSO had Hyperbaric Oxygen treatment?

    I've read some substances, even silicone, can become flammable in the super high Oxygen & Pressure of a Hyperbaric Chamber & Hyperbaric doc wants various clearances from my head and neck dr.

    So I wanted to see if anyone has actually been in a chamber with a PEG tube?

    & Has anyone tried "EarPlanes" for ear relief (I have inner ear problems) & it was ok in the chamber, as they're made of silicone? Or know a non-silicone alternative?

    Thanks, Happy Holidays! F

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited December 2022 #19
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    I had HBOT but did not have a PEG tube at the time. I did have to go to my ENT to get my one ear cleaned out and that made the treatment much nicer.

    I checked on the internet and can't find anything specific. I would just call a hyperbaric center and ask them. Interesting to know the answer I can't imagine putting a PEG tube under pressure would make it flammable and self-combust but I can't say for sure. But they do give us a plastic water bottle when we go in and that is considered safe.

    Take Care God Bless-Russ

    Merry Christmas

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