Has anyone tried steroid injections?

michdjp
michdjp Member Posts: 220
in Head and Neck Cancer #1
Hello to all,
I've been doing some research and wonder if anyone can shed some light on the idea of throat dilitation as well as steroid infections into the scar tissue to reduce inflammation, in hopes of less dilitations in the future.
My dad was dx 8-8-11 with tonsil and lymph stage 4a hpv. Finished chemo and rad end of October 2011. Had peg put in 9-11. Thankfully clean scans and scopes. We did speech therapy and tried to dilitation but the gi dr could not get the instrument past the epiglottic region and just referred us for another swallow study. We are going for an esphogium study (I think that's what it is called) its like the swallow study only of the esphogus. This study is with the ENT this time not the gi dr. The ENT (after study is performed will try to dilate this time).
My dad just wants to eat. (only liquids are going down..barley).
How do I help him to eat again?
As always, thank you for listening.
Michelle

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    dilations and steriods
    With respect to dilations, I have had four or five now, and after wearing the PEG tube for four years have been without it for three and while eating is still a work in progress, I am gaining a bit of weight and beginning to eat things I once thought would be highly unlikely if not impossible to get down my esophagus.

    The thing about dilations, as I understand it, is that they are most comfortable doing them in gradation, since one big expansion might blow something up, to be unscientific about it. Thus, I have had four or five, each apparently expanding the esoph a bit more, and perhaps removing some of the scar tissue that typically comes with radiation.

    In any event, I am now eating.

    Regarding not being able to get some object down his throat, in my case because of trismus (at the very least) they had to use pediatric devices on me (instruments for children), particularly for the mouth block, as an adult one simply would not fit.

    With respect to steroids, I have not experienced them in the way you suggest, but would advise that there is usually a steroid administered with the chemo 'cocktail' to help with appetite and perhaps nausea.

    Cortisone is a steroid, of course, and commonly used to reduce or elliminate inflammation in joints, so it comes as no surprise that this might be a consideration in dad's case, although I admit, not only have I had no part of that, but have not read of it in here over these last several years.

    Best wishes to dad and his family.

    Take care,

    Joe
  • michdjp
    michdjp Member Posts: 220
    #3
    soccerfreaks said:

    dilations and steriods
    With respect to dilations, I have had four or five now, and after wearing the PEG tube for four years have been without it for three and while eating is still a work in progress, I am gaining a bit of weight and beginning to eat things I once thought would be highly unlikely if not impossible to get down my esophagus.

    The thing about dilations, as I understand it, is that they are most comfortable doing them in gradation, since one big expansion might blow something up, to be unscientific about it. Thus, I have had four or five, each apparently expanding the esoph a bit more, and perhaps removing some of the scar tissue that typically comes with radiation.

    In any event, I am now eating.

    Regarding not being able to get some object down his throat, in my case because of trismus (at the very least) they had to use pediatric devices on me (instruments for children), particularly for the mouth block, as an adult one simply would not fit.

    With respect to steroids, I have not experienced them in the way you suggest, but would advise that there is usually a steroid administered with the chemo 'cocktail' to help with appetite and perhaps nausea.

    Cortisone is a steroid, of course, and commonly used to reduce or elliminate inflammation in joints, so it comes as no surprise that this might be a consideration in dad's case, although I admit, not only have I had no part of that, but have not read of it in here over these last several years.

    Best wishes to dad and his family.

    Take care,

    Joe

    Thank you for the
    Thank you for the information and I am soo glad to hear that you are eating and there is light at the end of this tunnel. It's just such a long tunnel.
    The dr. Did mention doing the dilitation little by little. the steroids I read about in md Anderson, north Carolina and louisanna. What is a truismus?
    I will not give up until my dad is sitting next to me at the table...eating!
    Thanks for your time
    Michelle
  • RushFan
    RushFan Member Posts: 224
    #4
    michdjp said:

    Thank you for the
    Thank you for the information and I am soo glad to hear that you are eating and there is light at the end of this tunnel. It's just such a long tunnel.
    The dr. Did mention doing the dilitation little by little. the steroids I read about in md Anderson, north Carolina and louisanna. What is a truismus?
    I will not give up until my dad is sitting next to me at the table...eating!
    Thanks for your time
    Michelle

    Botox
    I have a good friend who has had a radical neck disection after chemo and radiation. He has has had two dilations for stricture, and was on the peg for about two years.

    He just had his third dilation and was given a botox shot.

    He tells me this is the best he has felt in almost two years and is hoping the botox will help long-term.

    Best to you and yours,
    Chuck.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #5
    michdjp said:

    Thank you for the
    Thank you for the information and I am soo glad to hear that you are eating and there is light at the end of this tunnel. It's just such a long tunnel.
    The dr. Did mention doing the dilitation little by little. the steroids I read about in md Anderson, north Carolina and louisanna. What is a truismus?
    I will not give up until my dad is sitting next to me at the table...eating!
    Thanks for your time
    Michelle

    trismus
    Trismus is the inability to open the mouth normally. In my case it was caused certainly by surgery and perhaps by radiation scarring as well. I was provided physical therapy for this and it worked to the extent that I managed to improve the 'opening' from about 21mm to 28mm (the PT advised that 35mm would be considered 'normal').

    Again, best wishes to dad and his loved ones.

    Take care, Michelle,

    Joe
  • michdjp
    michdjp Member Posts: 220
    #6
    RushFan said:

    Botox
    I have a good friend who has had a radical neck disection after chemo and radiation. He has has had two dilations for stricture, and was on the peg for about two years.

    He just had his third dilation and was given a botox shot.

    He tells me this is the best he has felt in almost two years and is hoping the botox will help long-term.

    Best to you and yours,
    Chuck.

    Wow
    That is sooo great to hear he is doing so well. Is it just from the dilitation or do you think the Botox improved things. When I talk to the drs about the steroids they say the dilitation should be enough. I think from what I've read the steroids seem to improve things long term. Is he eating everything now? That is our goal.
    Thank you for your time.
    Michelle
  • RogerRN43
    RogerRN43 Member Posts: 185
    #7
    In theory...
    Steroids will decrease acute inflammation by retarding the process behind it.
    If the rad swelling is chronic, and/or fibrosis, it's hard to say if it will help in any way.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    RogerRN43 said:

    In theory...
    Steroids will decrease acute inflammation by retarding the process behind it.
    If the rad swelling is chronic, and/or fibrosis, it's hard to say if it will help in any way.

    agree with Roger
    this has been tried for scar prevention forever, with very limited results.
  • michdjp
    michdjp Member Posts: 220
    #9
    RogerRN43 said:

    In theory...
    Steroids will decrease acute inflammation by retarding the process behind it.
    If the rad swelling is chronic, and/or fibrosis, it's hard to say if it will help in any way.

    Thanks
    Thank you for the info. I just hope since we haven't tried dilitation that it will help. I was hoping steroid would just save us from the ongoing dilitations. Perhaps I'm getting a little ahead of myself and should just get to eating.....however that may be!
    Thank you
    Michelle

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