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Michael100
Michael100 Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
Hello , my name is Michael and I have had head and neck Cancer since the summer of 2009.
I initially had severe reactions to chemo and was in the Hospital for 16 days. After losing weight from over 200 lbs. to 138 lbs., I could not have survived without a peg tube. I am back up to 164 lbs. now.
After I was home for a couple of weeks I was re-admitted with a G.I. bleed! Two days after that I had an M.I while still in the Hospital. I still get my main nourishment from my Peg tube. The Gastro Dr. has been trying to stretch my esophagus so I can eat, but it has been only mildly successful . I also had a Port and went to have it removed on August 29 and ended up being admitted because I had another G.I. bleed before they could remove it. Thankfully I am back Home after spending another 8 days in the Hospital and am glad I found this forum with people
who can understand what I have been through.

Comments

  • DJG1
    DJG1 Member Posts: 121
    #2
    Welcome
    Michael,
    Sorry to find yourself here, but we all do welcome you. I am currently in treatment for H&N (Right tonsil) and I do not have a peg or feeding tube. Many on this site do have one or had one at one time. They will soon come to give you some information you are seeking. Sounds like you have been through a lot and hopefully things will begin to improve for you in the very near future.
    Deb
  • Glenna M
    Glenna M Member Posts: 1,576
    #3
    Welcome Michael
    It sounds like you've had a pretty rough year but hopefully things will start to immprove for you.

    You have come to the right place to find people who can understand what you are going through.

    Stay strong,
    Glenna
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    DJG1 said:

    Welcome
    Michael,
    Sorry to find yourself here, but we all do welcome you. I am currently in treatment for H&N (Right tonsil) and I do not have a peg or feeding tube. Many on this site do have one or had one at one time. They will soon come to give you some information you are seeking. Sounds like you have been through a lot and hopefully things will begin to improve for you in the very near future.
    Deb

    Hi there
    I am glad that you found this site. There are many great people here in various stages of battle that Iean on regularly for support and have come to call friends. Welcome.
  • Fire34
    Fire34 Member Posts: 365
    #5
    Glenna M said:

    Welcome Michael
    It sounds like you've had a pretty rough year but hopefully things will start to immprove for you.

    You have come to the right place to find people who can understand what you are going through.

    Stay strong,
    Glenna

    Michael
    What chemo did you have the reaction to? I had a reaction my first day to Erbitux. and like you was admitted for 8 days. After my body got use to the poison things went as well as expected.
    My PEG was placed during week 6 of chemo as I couldn't keep my weight up. U of Chicago was pretty picky on stuff like that. The fatigue and metal taste just took my appetite away.
    I went from 200 lbs. to 160 lbs over my 18 weeks of treatment. After finding the right food for the PEG my weight stayed there. IsoSource worked for me then I switched to Ensure. I started out with the drip and then just bolused as the drips took to long. I couldn't get enough in without the bolus between rads.
    Best wishes & Prayers on your recovery
    Dave
  • Michael100
    Michael100 Member Posts: 4
    #6
    Fire34 said:

    Michael
    What chemo did you have the reaction to? I had a reaction my first day to Erbitux. and like you was admitted for 8 days. After my body got use to the poison things went as well as expected.
    My PEG was placed during week 6 of chemo as I couldn't keep my weight up. U of Chicago was pretty picky on stuff like that. The fatigue and metal taste just took my appetite away.
    I went from 200 lbs. to 160 lbs over my 18 weeks of treatment. After finding the right food for the PEG my weight stayed there. IsoSource worked for me then I switched to Ensure. I started out with the drip and then just bolused as the drips took to long. I couldn't get enough in without the bolus between rads.
    Best wishes & Prayers on your recovery
    Dave

    Thank you for replying Fire 34. My Oncologist says that he is not sure which Chemo drug caused the reaction. I was getting 3 different ones originally so it must have been one of them. It is strange but after I recovered from the bad reaction, they put me on Erbitux as an alternative and I had no reaction to it . He told me that I could never have Chemo again which is one reason I went to have the port removed. Plus no one was accessing it when I would go for blood work or to have another procedure done, such as an Endoscopy. I was having it flushed once a month for seemingly no reason. I do use Ensure Plus 4 times a day to maintain my weight and can eat a little pureed food but that is all.
    Thank You for your wishes and Prayers. I wish the same for you
    Michael
  • KristynRuth86
    KristynRuth86 Member Posts: 140
    #7
    Michael100 said:

    Thank you for replying Fire 34. My Oncologist says that he is not sure which Chemo drug caused the reaction. I was getting 3 different ones originally so it must have been one of them. It is strange but after I recovered from the bad reaction, they put me on Erbitux as an alternative and I had no reaction to it . He told me that I could never have Chemo again which is one reason I went to have the port removed. Plus no one was accessing it when I would go for blood work or to have another procedure done, such as an Endoscopy. I was having it flushed once a month for seemingly no reason. I do use Ensure Plus 4 times a day to maintain my weight and can eat a little pureed food but that is all.
    Thank You for your wishes and Prayers. I wish the same for you
    Michael

    I am so so sorry to hear
    I am so so sorry to hear what you have been through. I pray the best for you in the future. This battle is so hard and I just pray your road to recovery is a much better journey.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #8
    We have
    Welcome Michael, you will find this site a huge benefit to your recovery and living your survivorship.

    We have all been thru what I call hell, but not all of us have been thru it the way you have. You will find everyone here is so supportive and caring. I hope you find the answer you need and continue to be active with CSN, so many need help and so many wanting to help.

    How is your taste? Are you able to do Liquids?

    Praying your visits/stays in hospital stop and you can continue your road of recovery.

    Joh
  • patricke
    patricke Member Posts: 570 Member
    #9
    WELCOME
    Hey Michael,

    Welcome to the neighborhood! You've been throuh a lot, so I'm hoping that you've seen the last of hospitalizations. I'm a big fan of the PEG Tube. Recovery is a long slow process, so take it one day/hour/minute/second at a time and you'll find that gradually life does get better. Hang in there..........*

    PATRICK
  • Scambuster
    Scambuster Member Posts: 973
    #10
    patricke said:

    WELCOME
    Hey Michael,

    Welcome to the neighborhood! You've been throuh a lot, so I'm hoping that you've seen the last of hospitalizations. I'm a big fan of the PEG Tube. Recovery is a long slow process, so take it one day/hour/minute/second at a time and you'll find that gradually life does get better. Hang in there..........*

    PATRICK

    Michael
    Nice to see you made it here Michael. I hope you can share your experience and help some of our brothers and sisters get through this as you have. Welcome.

    Scam
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #11
    Welcome, Michael
    Glad you are here. It's always good to hear from another survivor. Keep up the good fight.

    Deb
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    Welcome Aboard Michael
    Yes the Chemo and treatment stinks....but even though you had problems (which we all do in one way or another), you are making it, and have those survior instincts...keep it up.

    There's a ton of good people here and the knowledge base is huge from experience.

    Best,
    John
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #13
    SURVIVORSHIP
    Welcome Michael. Nice to hear another person kicked the beast to the curb. i know you went through this in 2009, but anything you can add relevant to your experience is helpfull to all of us now who are either going through treatment or a very new survivor.

    Again, welcome my friend.

    Mike
  • Pam M
    Pam M Member Posts: 2,196
    #14
    Hi
    Wow - you've had a time of it, haven't you? Hope the stretching starts making bigger strides. Welcome.

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