Peg Tube

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Darkdancer333
Darkdancer333 Member Posts: 115 Member
in Head and Neck Cancer #1

After 23 rads and 5 chemo they are putting in a PEG The phlegm is so bad cant keep anything down. Constant dry heaves. I have it all mouth sores, blisters on the neck, cramping. In about 1.5 weeks lost 15 lbs so it is time for plan B

Last night throat pain turned it up another gear

 

The radiation machine has broke down three times in last 2 weeks I hope this delay isnt costly.

This is an awful experience even though warned you never know til you experience it.. 

I think we can invent a new drink........Boost plus a shot of muscus what a lovely combo Can call it the "wrectched"

I sleep 3o minutes on and off mucuas is the culprit wake up dry heaves and choking

 

Just checkin in this BOT has kicked my arse lol

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    PEG membership drive this Saturday

    Dd333,

    Now you will see how the PEG half eat. Usually, I would hangém high on fast drip and take a nap.

    You sound somewhat normal and your humor is still intact.

    Remember when you thought the rash caused by Erbitux to be too much?

    Drink lots of water.

    Matt

  • Dean54
    Dean54 Member Posts: 160 Member
    #3
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    no pain meds?

    Sorry you are suffering so bad darkdancer. The liquid pain meds helped me so much but I didn't have near the problems either.

    Still have the muscous tho and get up nightly usually just once to go spit.

  • DanceSkater
    DanceSkater Member Posts: 62
    #4
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    Peg tube

    Hello DarkDancer !

    Sorry to learn that your condition is causing you to get a peg tube.  HOWEVER, I have had 2 peg tubes (still have one due to surgery

    complications) and have had NO PROBLEMS at all with either one.  There is some pain for a few days after the insertion of

    the tube.   

    The tube will enable you to easily get badly needed nutrition and calories.   Keep sipping on water, or whatever you can drink.

    I'll cross my fingers that your tube use is as easy as mine.

    Jan

  • kmadlom
    kmadlom Member Posts: 20
    #5
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    Mucous Is Rough

    Hi DarkDancer,

    So sorry to hear you have that dreadful mucous problem. My wife has it, too. It's so terrible and really impacts how much nutrition and water she can get in. She hasn't had a PEG yet, but it may be coming. We are on rad 23 and chemo 5 (happening as I write this). She lost 5 pounds in the last week and they have prescribed fluids three times a week. Her veins are suffering, something a PEG would relieve. I hope you get some relief. This mucous is one of the worst parts of this whole thing.

  • Billie67
    Billie67 Member Posts: 898
    edited April 2018 #6
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    DarkDancer,

    DarkDancer,

    I am sorry you are dealing with the dreaded mucous! I remember it well. So weird but the one thing I liked was tiny (really tiny) sips of carbonation. I felt like the carbonation broke up some of that mucous. Sometimes I just used plain soda water due to everything else tasting terrible and sometimes I could hand coke.  I too had a PEG and honestly it was a lifesaver!! Your belly will be a tiny bit sore for a few days where they insert but then you will be fine with it. I ended up having to use a pump with my PEG because I just needed a really slow rate for the fluids. But I would either just lay back and sleep while I "ate" or I'd watch TV, and usually fall asleep haha. 

    Let us know if you have any questions! Happy PEG-ing!

     

  • OKCnative
    OKCnative Member Posts: 326 Member
    #7
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    Sorry things have gotten to

    Sorry things have gotten to the point you need a PEG. I know you did not plan on that.

    I remember things getting so bad that literally after 5 days without sleep I had a consulation with the PEG surgeon so I could get that out of the way in preparation for an emergency insertation and placement. Literally when the young doc looked at me and smirked and said "I gurantee you'll need this PEG tube" I walked out and said "I'm gonna show that smart ****." 

    But it was really really hard. 40+ pounds lost and lots of stomping, kicking, crying and spitting up mucous and blood.

    DO NOT STOP SWALLOWING simply because you have a PEG tube. You MUST do those excercises at all times. I know so many people with swallowing issues because they simply stopped using their throat.

    Good luck. You're not defeated, just on a new path to the same goal.

  • utfandg
    utfandg Member Posts: 6
    #8
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    PEG

    The PEG saved my life. I fought and fought determined not to have a feeding tube. My body was begining to shut down and I was told I have no other choice. The PEG turned my body around. The body must have nourishment during chemo and radiation. I had no issues with my PEG. Ihavehad one twice now.

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #9
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    utfandg said:

    PEG

    The PEG saved my life. I fought and fought determined not to have a feeding tube. My body was begining to shut down and I was told I have no other choice. The PEG turned my body around. The body must have nourishment during chemo and radiation. I had no issues with my PEG. Ihavehad one twice now.

    I agree Utfandg

    I agree Utfandg

    even with my PEG I was hospitalized twice for  malnutrition and dehydration, during recovery. Cant imagine where I would be without it!  But, everyone has different things that work for them. No shame in doing what is needed and recommended by the team! 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #10
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    A Sunday meal PEGged for success.

    Dd333,

    The first and most important information I received from this forum (before) the radiation and Erbitux applications started (I already had my tongue, lymph node operation) was to DRINK LOTS OF WATER DAILY AND SWALLOW OFTEN.  I did just that, I worked at it all day long and afternoon long and evening long, every waking hour of the day.  I probably averaged 10 glasses of water (and  other fluids) daily.  Many sipps become a gulp and gulp can be a mouthful of cancer fighting refreshment.  It is good to continually flush out the poisons they are giving you, especial those H&N patients which opt for the platinum based chemo.  Flush your system!

    Like I said earlier, I had 2 PEG’s. One very bad (it did not work worth Jack S _ _ _)!  Itt would put tears in my eyes to try to use it and it was replaced by my #2 PEG a very friendly tube, who always worked, caused no infections, or ugly oozing.  I used it on  and off from week 4 (I guess) to the end of treatment and I had it popped at 2 weeks post.  I drank by mouth one meal a day (everyday) and was (in hind sight) a very good applicant for NO PEG (go figure, who knew).  I guess the majority of the H&N candidates passing through my cancer treatment doors were leaning PEG (I was not).

    Anyway, it worked, I had it removed and gave it to the homeless, where it has started its next life in the woods, north of town by the railroad tracks.

    Oh boy the sun is peeking  out, I must go out and welcome it to our back yard.  We had 4 bunnies jumping around.

    Matt

  • phillyboy
    phillyboy Member Posts: 23 Member
    #11
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    peg tube

    Finally got my peg tube out today. I think I was using it as a crutch for too long. It was  easier than I expected. I hope others will have same experience . Still no saliva post radiation 9 months but some taste and use water, gravy and apple sauce to wash some foods down. Remaining optimistic. Dry mouth has been a very  frustating experience for me.

  • DanceSkater
    DanceSkater Member Posts: 62
    #12
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    phillyboy said:

    peg tube

    Finally got my peg tube out today. I think I was using it as a crutch for too long. It was  easier than I expected. I hope others will have same experience . Still no saliva post radiation 9 months but some taste and use water, gravy and apple sauce to wash some foods down. Remaining optimistic. Dry mouth has been a very  frustating experience for me.

    Easy to Swallow Food ?

    What foods are you eating ?  I would like to try more than I'm eating right now and am looking for suggestions.

    I can't eat eggs or many foods that contain eggs (like mayo and many salad dressings).

    Jan

  • debbiel0
    debbiel0 Member Posts: 134 Member
    #13
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    DanceSkater said:

    Easy to Swallow Food ?

    What foods are you eating ?  I would like to try more than I'm eating right now and am looking for suggestions.

    I can't eat eggs or many foods that contain eggs (like mayo and many salad dressings).

    Jan

    Food suggestions

    I have food allergies that include egg and all dairy, so finding a "menu" is challenging.

    There are lots of recipes that have been adapted to vegan that I use adding meat for the rest of the family. I find meat difficult to eat still so can do without for now.

    my go to dinner is:

    Egg free pasta ( I make my own) . For a simple sauce just heat a can of coconut milk, add some veg. Asperagus, bell peppers, celery, sundried tomatoes work well. Simmer sauce to reduce, toss in cooked pasta. Easy peasy. Boneless skinless chicken breast chopped in small peices is good added in too.

    I add garlic, onion and spices for the family but leave mine plain.

    Baked potatoes with butter and vegan cream cheese instead of sour cream is tasty too.

    If you would like more ideas, you are welcome to email me debmoore2118@gmail.com

    Deb

  • yensid683
    yensid683 Member Posts: 349
    #14
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    Peg advice

    when you are using the PEG, remember that if you have to laugh, cough or sneeze, that you'll need to close the belly clamp before you do.  I didn't the first time I used it and the sneeze drove a lot of my just imbibed meal back up and out of the tube.  I was sitting in a recliner in our family room at the time. I thought we'd gotten it all cleaned up but 18 months later I was painting the ceiling in that room and found several dots of dried 'formula'.  I laughed about it at the time, but closing that clamp is one of the things that most 'instructions' neglect to mention!

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    #15
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    yensid683 said:

    Peg advice

    when you are using the PEG, remember that if you have to laugh, cough or sneeze, that you'll need to close the belly clamp before you do.  I didn't the first time I used it and the sneeze drove a lot of my just imbibed meal back up and out of the tube.  I was sitting in a recliner in our family room at the time. I thought we'd gotten it all cleaned up but 18 months later I was painting the ceiling in that room and found several dots of dried 'formula'.  I laughed about it at the time, but closing that clamp is one of the things that most 'instructions' neglect to mention!

    lol its always fun to watch

    lol its always fun to watch your stomach backfire. Gnarly looking stuff..

    I have me peg for  two weeks its doing the job I am maintaining my weight.... Strawberry and chocolate boost......Chef Ramsey needs to check this stuff out bland !!!!!!!!!!

    Doc put me on morphine because of the tube.. I get these awful stomach muscle spasms.. Sometime i need help getting up off the radiation table. Same as bed at home..Assistance needed

    When your an ole fart like me and the radio;ogist is a cute girl I will take all the help i can get. My motto never stop flirting !!!!!!!!!!

  • dan1658
    dan1658 Member Posts: 11
    #16
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    Those machines

    seem to break down often.

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