Treatments

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Comments

  • OKCnative
    OKCnative Member Posts: 326 Member
    #22
    wbcgaruss said:

    Peg's

    My opinion is if you think you might need it to get the tube. If your medical folks think you should have one-get it. I could not swallow anything for 4 or 5 months but I did not know that was the way it was going to be when I started. I could not have lived and survived without the feeding tube. I could have said I'm going to tough it through and swallow no matter what but my throat was closed from the radiation no matter how hard I tried I could not swallow anything.  My cancer team would not start treatment unless I got a feeding tube and my nurse navigator was there for the operation and saw me afterwords-great support. So I think your cancer team has a good idea based on your cancer situation whether you should have the feeding tube. You will probably be going through enough difficulty with all that treatment involves let alone getting a tube put in when all of a sudden you haven't eaten in 3 days and now it's a must do right away. This treatment is tough-do what you think is best for you.

    Knowing what I knew about

    Knowing what I knew about other patients and other countries, had my team told me they wouldn't proceed unless/until I got a PEG then I would have fired that team and went elsewhere.

    My first docs wanted to do radical neck dissection on both sides of my neck and robotic surgery on my tongue. I knew there was no reason not to do rads and chemo first. I fired them and went to Stephenson Cancer Center. No surgery, no PEG, no chemo port, a short period of hell (weeks, not months) and then I was back to normal.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited October 2018 #23
    welcome

    Hi Garrie,

    Welcome to our H&N forum, where questions bounce around for years with no definitive answer, but these conditions will make your life so much more interesting.  Up till now you have probably been making very important decisions about your treatment and did not realize it is all on you (that is the way the doctors want it to be).

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, radiation and Erbitux) (Erbitux (Cetuximab) is the stuff which made Martha Stewart famous and go to jail).  Well, not the Cetuximab, but the falsifying her computer log and lying about it did.  Now, don’t you falsify anything or lie to us.

    Reading through the posts I think I can pound a few more words of wisdom your way.

    I had 2 PEGs, the first one very, very bad installation and it brought me to tears the few times I tried it. I got my second one around week 4 or 5 and it was a good day for my surgeon as it worked flawlessly, until week 2 post when I had it removed.  I was drinking at least one of my meals every day and looking back, I could have made it through WITHOUT any PEG. If I had a do over I would not let them talk me into a PEG.  I also would not get a nasogastric tube, no way!!!

    It is important to tell you one of the very first things I learned from reading the posts on this forum, at least 1 month before my treatments began, was to drink lots of water and swallow often.  I thought, “that seems easy, I can do that” and I did.  I drank about 10 glasses of water every day during treatments and still drink at least 8 glasses a day at 6 years, 7 months post.

    Anyway, you will need to figure out your drink of choice yourself, through trial and error. We can give you suggestions and recipes for the items which helped each of us get through this eating, swallowing, taste, no taste “food mess” you have gotten yourself into.  It really isn’t too bad and I rather enjoyed trying and finding what foods and drinks worked for me. I did not return to the Land-Of-Eaten for 7 months.  I drank a very large number of smoothies, protein drinks and I ate a ton of tomatoes and cucumbers in olive oil (I loved the tomatoes, cucumbers and olive oil).

    One thing I don’t think I ever mentioned on here is I ate lots of popcorn, (from almost the beginning of recovery). My wife, Candy and I eat lots of popcorn and she once in a while mentions “how did you eat that popcorn, when you could not eat very much at all”?  You will figure it all out.

    Your treatments must be just about over, I hope all is working out for you.

    I had the new Reese’s Outrageous Blizzard treat (made with Reese’s Peanut Butter Cups, Reese’s Pieces, peanut butter and caramel topping blended with creamy world famous DQ vanilla soft serve tonight and I still like the Chocolate Chip Cookie Dough Blizzard better. Good to know.

    Matt

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #24
    Peg's

    My opinion is if you think you might need it to get the tube. If your medical folks think you should have one-get it. I could not swallow anything for 4 or 5 months but I did not know that was the way it was going to be when I started. I could not have lived and survived without the feeding tube. I could have said I'm going to tough it through and swallow no matter what but my throat was closed from the radiation no matter how hard I tried I could not swallow anything.  My cancer team would not start treatment unless I got a feeding tube and my nurse navigator was there for the operation and saw me afterwords-great support. So I think your cancer team has a good idea based on your cancer situation whether you should have the feeding tube. You will probably be going through enough difficulty with all that treatment involves let alone getting a tube put in when all of a sudden you haven't eaten in 3 days and now it's a must do right away. This treatment is tough-do what you think is best for you.

  • Garrie
    Garrie Member Posts: 12
    edited October 2018 #25
    CivilMatt said:

    welcome

    Hi Garrie,

    Welcome to our H&N forum, where questions bounce around for years with no definitive answer, but these conditions will make your life so much more interesting.  Up till now you have probably been making very important decisions about your treatment and did not realize it is all on you (that is the way the doctors want it to be).

    I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, radiation and Erbitux) (Erbitux (Cetuximab) is the stuff which made Martha Stewart famous and go to jail).  Well, not the Cetuximab, but the falsifying her computer log and lying about it did.  Now, don’t you falsify anything or lie to us.

    Reading through the posts I think I can pound a few more words of wisdom your way.

    I had 2 PEGs, the first one very, very bad installation and it brought me to tears the few times I tried it. I got my second one around week 4 or 5 and it was a good day for my surgeon as it worked flawlessly, until week 2 post when I had it removed.  I was drinking at least one of my meals every day and looking back, I could have made it through WITHOUT any PEG. If I had a do over I would not let them talk me into a PEG.  I also would not get a nasogastric tube, no way!!!

    It is important to tell you one of the very first things I learned from reading the posts on this forum, at least 1 month before my treatments began, was to drink lots of water and swallow often.  I thought, “that seems easy, I can do that” and I did.  I drank about 10 glasses of water every day during treatments and still drink at least 8 glasses a day at 6 years, 7 months post.

    Anyway, you will need to figure out your drink of choice yourself, through trial and error. We can give you suggestions and recipes for the items which helped each of us get through this eating, swallowing, taste, no taste “food mess” you have gotten yourself into.  It really isn’t too bad and I rather enjoyed trying and finding what foods and drinks worked for me. I did not return to the Land-Of-Eaten for 7 months.  I drank a very large number of smoothies, protein drinks and I ate a ton of tomatoes and cucumbers in olive oil (I loved the tomatoes, cucumbers and olive oil).

    One thing I don’t think I ever mentioned on here is I ate lots of popcorn, (from almost the beginning of recovery). My wife, Candy and I eat lots of popcorn and she once in a while mentions “how did you eat that popcorn, when you could not eat very much at all”?  You will figure it all out.

    Your treatments must be just about over, I hope all is working out for you.

    I had the new Reese’s Outrageous Blizzard treat (made with Reese’s Peanut Butter Cups, Reese’s Pieces, peanut butter and caramel topping blended with creamy world famous DQ vanilla soft serve tonight and I still like the Chocolate Chip Cookie Dough Blizzard better. Good to know.

    Matt

    One week post treatment

    Hi,

    Finally l have been able to stick my head out of my hole to post a comment..It's been a rough 7 weeks getting pounded with radiation. This last week post has been hell.The human body was not made to absorb radiation.

    I lost 25 lbs so on week 5 received a peg tube . The feedings are going well so l think it was the right choice for me. I can drink some water right now but that's about  it.

    The phlegm in my throat is hell. For me ,the phlegm is the worst side affect because it's constant. Many sleepless nights.l hope it stops soon.

    I have been off the pain meds now for a week so l'm feeling good about that. They really screwed up my bowels.

    My sense of smell is really weird now. Nothing smells like it should . Everthing smelIs like crap. I hope that changes in time.

    Dentures don't fit right now probably because of the weight loss. F**K !

    Anyway, it was so nice to finish the treatments. I'm worried about  the eating-swallowing thing down the road. I guess l should be taking one day at a time.

    Garrie

     

     

     

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,466 Member
    #26
    Difficult Period Garrie

    You are going through a difficult period for sure but you will make it you are out the other side now-finished with treatment. My Doc would not start treatment unless I got a feeding tube to start. As far as phlegm yes it is bad I was sleeping in a recliner and still, it would wake me up choking me I thought I was going to die a couple times (sorry to be so blunt but that is the way I felt at the time). Rinse with a baking soda/salt mixture a lot to stay ahead of it as best you can. It is a difficult time but you will get through it. Your situation for a lot of your treatment effects are difficult, smell, dentures, phlegm, sleep, and the worry of swallowing and eating again these things will pass but they are front and center now and certainly a lot to deal with. Glad you are off pain meds they do mess up your system and many times cause constipation. I had the same worries will I be stuck with a feeding tube but I am able to eat most anything now but definitely have to chew well before swallowing. God Bless & Good Luck you will get through this one day at a time-Russ

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