New to the group!

Kim8115
Kim8115 Member Posts: 4
edited November 2016 in Head and Neck Cancer #1



Nov 18, 2016 - 4:16 pm





hi everyone, I'm new here but have been trying to do research about how likely it will be that I can wear my orburator during the time frame I'm having the dual chemo and radiation over the next few months. I had my surgery about a month ago and obviously like the orburator for aesthetic and speaking reasons. At first I was told over the next few months my mouth will be in too much pain and pretty much no more orburator but as I prepare to begin chemo Monday and radiation shortly after another doctor said some patients are still able to wear the orburator sometimes. obvioisly I can't wear it during the actual radiation treatment but I'm wondering on off days when I go out and about or even talking on the phone if wearing it seems like a reasonable possibility. has anyone here gone through there stint of radiation with an orburator still being a possibility or is it more reasonable to assume the pain would be too great because of the tight jaw and sores the radiation leaves behind? Was anyone here able to swallow at least shakes all the way through radiation? I got my feeding tube yesterday in case I need it but I am really hoping to swallow/ avoid the feeding tube as long as possible. Also, i start erbitux on Monday if anyone has any tips or anything to share with that. Thanks to anyone reading, im super greatful to have found this board. Best wishes to all!! Kim

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited November 2016 #2
    welcome again

    Hi Kim,

    I still know very little about an obturator and I already mentioned my time with Erbitux.

    I did have a PEG tube, but always drank at least one meal a day along with 10 glasses of water.  It is very important that you keep swallowing and if you manage that you are ahead of the game.  So much that they told me did not make sense, I mean, what do you mean lose my taste or forget how to swallow, but it is true, this ride is only H&N normal.

    It is hard to say exactly what side effects will come to entertain your day.

    You will learn.  You will do great.

    Matt

  • Kim8115
    Kim8115 Member Posts: 4
    #3
    CivilMatt said:

    welcome again

    Hi Kim,

    I still know very little about an obturator and I already mentioned my time with Erbitux.

    I did have a PEG tube, but always drank at least one meal a day along with 10 glasses of water.  It is very important that you keep swallowing and if you manage that you are ahead of the game.  So much that they told me did not make sense, I mean, what do you mean lose my taste or forget how to swallow, but it is true, this ride is only H&N normal.

    It is hard to say exactly what side effects will come to entertain your day.

    You will learn.  You will do great.

    Matt

    Nutrition

    hi Matt, thank you for this seriously so much and drilling home the water. im taking this to heart and will drink water like it's going out of style, I don't want to lose the ability to swallow- I'm sure all of us here wouldn't want that, but I'll do my best On this water drinking! 

    May i ask what nutrition you went with for the feeding tube meals? Do you know how frequent losing teeth is with the radiation? Or does anyone here know about how common losing our remaining teeth is through the radiation? I've already lost so many from surgery.

  • bebo12249
    bebo12249 Member Posts: 181 Member
    edited November 2016 #4
    I know nothing about an

    I know nothing about an orburator... But many of us were able to swallow during rads. I asked for a tube (only weighed 160 starting) but was told to wait to see if needed. I only lost 15 lbs and never got a tube.  I drank Boost VHC. I lost no teeth and I'm one year out. There are many possible effects of rads and other treatments but you will likely only experience some of them. Hang on and the treatments will be behind you soon. Bill

  • georgiasurfer
    georgiasurfer Member Posts: 63 Member
    #5
    Yes you can

    My husband wore his obturator during treatment. He had to get it adjusted a couple times but other no problem.  He never took it out for actual treatment either. He is now 9 weeks post treatment and is having problems with new sores where the obturator fits and is having a heck of a time.  Good luck and hang in there. 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited November 2016 #6
    teeth & PEG juice

    Kim,

    Teeth can be a big concern, but it is mostly dependent on existing condition of your teeth and where the cancer  is located.

    My rad onc talked with my dentist and I have had no issues and I am 4.5 years post treatment.

    When I used my PEG I used Jevity, when I drank it was ensure, protein drinks and doctored up smoothies.

    Matt

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