No PEG when having radiation on neck

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Comments

  • kkw62
    kkw62 Member Posts: 12
    #22
    As a caregiver I would
    As a caregiver I would definately recommend you have a PEG installed. My husband lost 50+ pounds that he didn't have excess to loose. He had major difficulty within the first 2 wks even just swallowing water. Food had no taste so he chose often not to eat. The PEG was a life-saver - literally! It was also an easy way to get meds in when he could not swallow. Most of his meds were written in liquid form including morphine when he could no longer swallow.
  • fishing_again
    fishing_again Member Posts: 7
    #23
    kkw62 said:

    As a caregiver I would
    As a caregiver I would definately recommend you have a PEG installed. My husband lost 50+ pounds that he didn't have excess to loose. He had major difficulty within the first 2 wks even just swallowing water. Food had no taste so he chose often not to eat. The PEG was a life-saver - literally! It was also an easy way to get meds in when he could not swallow. Most of his meds were written in liquid form including morphine when he could no longer swallow.

    Peg Tube and Por-a-Cath
    I was only 51 and in good health , My dr recomended the peg tube but didnot insist , I went ahead with it thinking I would rather have it and not need it than try lator . The peg tube turned out to be the only way I could keep weight - 3000 calories a day for a year from a bag at night while I slept , I stil have not gained weight after 2- years , food has not tasted the same, even if you can get food down past the pain their doesnt seem to be much around you,ll want to eat ?
    Anything you can do to help your recovery (( get it ))
    Good luck friend
  • cwcad
    cwcad Member Posts: 117
    #24
    fishing_again said:

    Peg Tube and Por-a-Cath
    I was only 51 and in good health , My dr recomended the peg tube but didnot insist , I went ahead with it thinking I would rather have it and not need it than try lator . The peg tube turned out to be the only way I could keep weight - 3000 calories a day for a year from a bag at night while I slept , I stil have not gained weight after 2- years , food has not tasted the same, even if you can get food down past the pain their doesnt seem to be much around you,ll want to eat ?
    Anything you can do to help your recovery (( get it ))
    Good luck friend

    finshing_again has it right
    This is not a situation for less is more. In this case more is not enough. Steps taken in the early stages of your treatment will pay dividends to you in the later stages of recovery. I was so short term in my thinking that it was debilitating to me. To think that after all the treatments I was to get worse did not compute to me at the time. Well, I did get worse and became devastated and depressed. Not accepting that condition has made my recovery much more complicated than it needed to be. I am finding that acceptance has been a very difficult task for me to work through. Coming to this site has shown me the error of my ways. Thank God!!
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #25
    cwcad said:

    finshing_again has it right
    This is not a situation for less is more. In this case more is not enough. Steps taken in the early stages of your treatment will pay dividends to you in the later stages of recovery. I was so short term in my thinking that it was debilitating to me. To think that after all the treatments I was to get worse did not compute to me at the time. Well, I did get worse and became devastated and depressed. Not accepting that condition has made my recovery much more complicated than it needed to be. I am finding that acceptance has been a very difficult task for me to work through. Coming to this site has shown me the error of my ways. Thank God!!

    i would definitely get the
    i would definitely get the PEG tube. you cannot be prepared enough going into this. i have a PEG and i started at about 130 lbs, and i am down to 88 lbs. you don't know pain until you are a head and neck cancer patient going thru radiation. man o man. there were days where my mouth bled constantly. one day going home from radiation the whole piece of skin on the roof of my mouth slagged off. that was the most pain i ever had. i am not trying to scare you, but i wish i would have known how hard and painful it would be. i could not eat almost immediately after starting treatments. my mouth is still destroyed. i have not eaten an actual meal since 4-19-09. my radiation was over on 5-15-09. i still have my PEG tube in.

    talk to a nutritionist and work with one during treatment. most head and neck cancer patients die from malnutrtion. be prepared.

    i used magic swizzle and was on 75mcgs of Fentanyl, and the pain was unbareable. i am still on 50 mcgs, and my mouth is still in daily pain. i live with at least a 4 on the pain scale everyday, constant. have so many problems with my dry mouth.


    i wish you the best of luck and a speedy recovery. again, not trying to sound harsh, but i was not prepared for the pain that i had to endure.
  • micktissue
    micktissue Member Posts: 430
    #26
    sweetblood22 said:

    i would definitely get the
    i would definitely get the PEG tube. you cannot be prepared enough going into this. i have a PEG and i started at about 130 lbs, and i am down to 88 lbs. you don't know pain until you are a head and neck cancer patient going thru radiation. man o man. there were days where my mouth bled constantly. one day going home from radiation the whole piece of skin on the roof of my mouth slagged off. that was the most pain i ever had. i am not trying to scare you, but i wish i would have known how hard and painful it would be. i could not eat almost immediately after starting treatments. my mouth is still destroyed. i have not eaten an actual meal since 4-19-09. my radiation was over on 5-15-09. i still have my PEG tube in.

    talk to a nutritionist and work with one during treatment. most head and neck cancer patients die from malnutrtion. be prepared.

    i used magic swizzle and was on 75mcgs of Fentanyl, and the pain was unbareable. i am still on 50 mcgs, and my mouth is still in daily pain. i live with at least a 4 on the pain scale everyday, constant. have so many problems with my dry mouth.


    i wish you the best of luck and a speedy recovery. again, not trying to sound harsh, but i was not prepared for the pain that i had to endure.

    sweetblood
    Wow. Do know what rad energy you had? Was it over 60 grays. You are remarkable! You *must* be incredibly strong.

    Respectfully,

    Mick
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #27
    micktissue said:

    sweetblood
    Wow. Do know what rad energy you had? Was it over 60 grays. You are remarkable! You *must* be incredibly strong.

    Respectfully,

    Mick

    micktissue
    i don't think it was over 60. i remember him saying it was a pretty average standard amount, because i had asked if i could or should have less radiation due to my genetic blood disorder of Fanconis Anemia. he said no. i had 9 stops during my radiaton treatments. it felt like forever during each one, squshed under that stinkin' mask. after they let me out my face was waffle imprinted, that is how tight that sucker was. i would bring in cd's to listen to, and i would go thru about 5 songs. about 20-25 minutes per radiation treatment. about a half hour to thirty five minutes counting the getting on and off the table and 'lock down'.

    everyone has always told me how strong i am throughout my life. lol. i don't feel that way, but i suppose since everyone tells me that it must be true. you just gotta put your head down and plow thru. it's tough. i am still not back to work yet. been battling this thing for a year now. i am not sure if i knew how bad my mouth was going to get before i did radiation, that i would choose to do the radation again. but you cannot monday morning quarter back, so it is what it is now.

    i guess i read that you are sort of just jumping into this thing. i wish you much luck and many blessings. feel free to ask me anything if you think i can help you in any way.

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