Should I get PEG tube?

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  • PJ47
    PJ47 Member Posts: 376
    #22
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    Shell_7801 said:

    Rad Onc said no

    He talked me out of it.  Told me as long as I can get the Ensure down he is happy.  No PEG.  Said I would still be nauseaus and would not have any more energy so I said okay.

    I want more energy but if PEG won't help with that then I'll continue to slowly sip Ensure and pray it stays down.  20 rad down, 13 to go and I'll feel better then.

     

    He said after one month I'll be 80 percent back to myself and that I'm doing great as I have not sores in my mouth.  

    Still waiting for marijuana card but have found that it does help me sleep and it helps with neausea too.

    Peace out

    M

     

    Oh crap

    The dreaded feeding tube question.  I agree with Matt you need to get the nausea better controlled so try a different anti-emetic. otherwise you will not get enough nourishment  will loose too much weight and wil not heal well.  Emend is supposed to be the best.  My nausea was controlled by 12.5 mg. phenergan (can be taken as a suppository if you are not able to swallow or throwing up).  

    My Radiation oncologist forced a feeding tube on me and I ended up having to have 2 tube surgeries and never used it except to flush it out daily as I was able to swallow the entire time.  Mine hurt so much it kept me awake at night.  Most people do not have this experience.  Just lucky I guess.

    That said, it can always be done on an emergency basis if you need one so keep that thought in mind, and then wait and see if you need it.

    Best of luck and keep swallowing,

    PJ

  • Shell_7801
    Shell_7801 Member Posts: 71
    #23
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    Noellesmom said:

    say yes to a peg pre-treatment

    My husband had a peg in place before treatment started.  With the goal of continuing oral nutrition as much as possible, we felt it was an insurance policy.  Placed during an outpatient surgery visit, had we waited after treatment started we were told it would mean a hospital visit of several days.

    Jim never used his peg and consumed 3500 calories at a minimum every day.  No weight was lost until about 6 weeks post-treatment.  At that point, despite maintaining the high calorie count and increasing some days, Jim lost 60 pounds.  The radiologist told us it was from the continuing effects of the radiation.

    I was the one who insisted on the peg: even though we never used it, I continue to believe it helped us to know we had a backup plan for nutrition and hydration as the radiation continued to do its work.

    Today is my worst day so far.

    Today is my worst day so far.  Ready to give up, stop treatment and wake up from this nightmare.

    I'm going to demand a feeding tube.  I have to atleast try.

    Michelle

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #24
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    PEG this

     

    Shell,

    To remain PEGless you must consume the needed nutrients and calories.  You must also get the vomiting and nausea under control.   Have you tried alternate anti-nausea meds and various drinks?  Is there anything you can drink safely now?  Are you well hydrated, not being can make you sick.

    Getting a PEG is an option, but you might have all the same issues except with a little  friend hanging out.  A PEG does not guarantee tranquility..

    Happy decisions,

    2 - PEG Matt

     

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #25
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    Shell_7801 said:

    Today is my worst day so far.

    Today is my worst day so far.  Ready to give up, stop treatment and wake up from this nightmare.

    I'm going to demand a feeding tube.  I have to atleast try.

    Michelle

    I hit the wall too

    I was ready to stop with only 7 more to go.  I couldn't do anything.  No energy.  Could only swallow water, but threw it right back up.  I was DONE.  My rad onc didn't want me to get a PEG as he felt they were not needed.  His associate said I would starve without one.  I got one the next day and it made a HUGE difference.  Don't give up!  I was ready to quit and the wonderful people here encouraged me to stay.  I finished strong (and nourished!) and know that I did all I could to fight this monster.  ((HUGS)) to you and keep us posted!

  • Sonja.K
    Sonja.K Member Posts: 79 Member
    #26
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    Shell_7801 said:

    Today is my worst day so far.

    Today is my worst day so far.  Ready to give up, stop treatment and wake up from this nightmare.

    I'm going to demand a feeding tube.  I have to atleast try.

    Michelle

    Hang in There

    Hang in there, I know this sucks.  But whenever I complain my son reminds me, "its better then dead".  

    Nightmare is the best word.  I have five more to go, I know you are right behind me.

    ~Sonja

  • Sonja.K
    Sonja.K Member Posts: 79 Member
    #27
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    Shell_7801 said:

    Today is my worst day so far.

    Today is my worst day so far.  Ready to give up, stop treatment and wake up from this nightmare.

    I'm going to demand a feeding tube.  I have to atleast try.

    Michelle

    Is there a way to delete a comment?

    I accidentally posted twice, I see how to edit a comment.   Is there a way to delete?

  • Guzzle
    Guzzle Member Posts: 710
    #28
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    Sonja.K said:

    Is there a way to delete a comment?

    I accidentally posted twice, I see how to edit a comment.   Is there a way to delete?

    Sans Peg...

    HiI got by without one . Treated eating like a job. I suppose its not one size fits all!

  • petroglyph
    petroglyph Member Posts: 41
    #29
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    Shell_7801 said:

    Today is my worst day so far.

    Today is my worst day so far.  Ready to give up, stop treatment and wake up from this nightmare.

    I'm going to demand a feeding tube.  I have to atleast try.

    Michelle

    feeding

    I guess you have talked with a nutritionist and have decided the best "ensure" for your bodies needs.

    I am just another opinion on the internet, not a pro. You know there are different formulations of the ensure?

    I am only telling you this out of love. I drank plenty of the ensure's and had a feeding tube when I was still post op in the hospital. I was able to prove I could swallow something, and promised not to starve to death until my follow up, so they pulled my feeding tube.

    I was able to go to  a "Whole foods" market and they have some drinks in similar little bottles that I consider better nutritionally. When I read the label on my ensure I was surprised that doctors consider it nutrition. Granted, ounce for ounce it is pure sugar calories and weight is important for fighting strength, but our body needs nutrition not just empty calories.

    What I did for awhile was make smoothies. It still takes all day it seems to get through what it takes to feed myself quality nutrition. The tool I used I got at Walmart and it is called the "nutra bullet" by magic bullet. They are obvious, I have had no trouble and it seems to be reliable. Note, don't put ice in them, they are not for margarita's. Anyway, I started making my own drinks.

    My favorite is almond milk with vanilla and I put in cooked yams. I experiment around but I think now I may be addicted to yams, I can't seem to stop eating the darn things. I now love them. It is near impossible to get at least 2000 plus calories per day without eating sugar. My belief is dried cane sugar is better for your body than processed white sugar. You can make some wonderful smoothies for your health, add in protein powder etc. It is a constant pita and is not cheap but makes me feel like I am putting up a better fight.

    There is no known tumor markers for my H&N squamos cell carcinoma so I just wanted proof that the treatments they wanted to give me post surgery were helping. Without a marker or measure to go by they just decided to give me rad "statistically". So far I have refused further treatments.

    Eventully it will be left up to our immune systems to fight what is left of the disease when we are done with treatments. I read studies from Johns Hopkins that said we all have cancer within us probably 4 times in our lives. Usually the body can fight it off, it is when a tumor shows up that our bodies defenses are compromised.

    My understanding is the most promising treatments in the big pharma pipeline all have something to do with immune boosting? I have also read that when people die from cancer what is happening is they are starving. Not sure on that. But I fight vigorously every day for my health and so far, I am told I look good, and my blood is good.

    One thing I enjoy so far is that I joined a local cancer support group to speak with survivors. There is nothing that compares emotionally support wise to being able to sit at a table with people that have done this stuff before us and came out the other side and their opinions on a healthy out look.

    Best wishes,   amen

  • donfoo
    donfoo Member Posts: 1,771 Member
    #30
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    Shell_7801 said:

    Today is my worst day so far.

    Today is my worst day so far.  Ready to give up, stop treatment and wake up from this nightmare.

    I'm going to demand a feeding tube.  I have to atleast try.

    Michelle

    You did your best

    Sounds like time to get the PEG if you can no longer get enough calories orally. You also need to keep the nausea under control; the food goes to the same place. Good luck. Don

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