Looking for Hypopharyngeal (Esophageal/Laryngeal) Survivors, Please

Pam M
Pam M Member Posts: 2,196
in Head and Neck Cancer #1
Hey - I think Charles54's earlier post got lost in the shuffle - he came in a few days ago to introduce himself and check for folks with a diagnosis similar to his. He has hypopharyngeal, and was wondering if there were others in the same boat.

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    Jim is in remission
    My husband, Jim, is in remission from hypopharyngeal cancer. Diagnosed May 2010, treatment finished August 2010; last PET November 2011 - NED. Next CT scan May 2012.

    Jim's main issue is pain from the collateral damage from radiation. Taking Cymbalta and Neurontin and have tried several other medications, as well as nerve blocks, with no real effect.

    Charles, where are you in your cancer treatment/remission?
  • noelles_jim
    noelles_jim Member Posts: 12
    #3
    Hypopharyngeal Survivors
    Hello Charles54, I am Jim, yes the one my wife talks about. I am in remission, but unfortunately had a lot of damage from the rads. Let me hear from you. Now that I know your here I will keep an eye out for your postings. Don't know that I will be a lot of help, but maybe we can talk some things through. Might make it a little easier anyway.

    Be watching for ya.

    Jim
  • Pam M
    Pam M Member Posts: 2,196
    #4
    Noellesmom said:

    Jim is in remission
    My husband, Jim, is in remission from hypopharyngeal cancer. Diagnosed May 2010, treatment finished August 2010; last PET November 2011 - NED. Next CT scan May 2012.

    Jim's main issue is pain from the collateral damage from radiation. Taking Cymbalta and Neurontin and have tried several other medications, as well as nerve blocks, with no real effect.

    Charles, where are you in your cancer treatment/remission?

    Hi
    Glad you and Jim saw the post
  • shoeloy
    shoeloy Member Posts: 70
    #5
    hypopharyngeal
    I too had hypopharyngeal cancer. NED since Apr 2011 when I finished treatments. Learning to live the new normal.
  • Charles54
    Charles54 Member Posts: 4
    #6
    Thanks
    Thanks for re-posting my information Pam. I now have some folks that I can compare notes with.
  • Charles54
    Charles54 Member Posts: 4
    #7
    noelles_jim said:

    Hypopharyngeal Survivors
    Hello Charles54, I am Jim, yes the one my wife talks about. I am in remission, but unfortunately had a lot of damage from the rads. Let me hear from you. Now that I know your here I will keep an eye out for your postings. Don't know that I will be a lot of help, but maybe we can talk some things through. Might make it a little easier anyway.

    Be watching for ya.

    Jim

    Hypo survivors
    Hi Jim-

    Thanks to you, your wife and "Shoeloy" for answering my post. I appreciate the offer of talking. What type(s) of pain and side effects are you having? I had 3 chemo treatments along with 38 rads. NED 6 months in December, 2011.
    From speaking with my radiologist, and searching the internet, I can't seem to find any agreement on how long it takes for some the damaging long term effects from treatment to go away or even if they ever will. The answers seem to range from weeks to months to years or never. Is everyone's healing process so different?

    Thanks again,
    Charles
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    Charles54 said:

    Hypo survivors
    Hi Jim-

    Thanks to you, your wife and "Shoeloy" for answering my post. I appreciate the offer of talking. What type(s) of pain and side effects are you having? I had 3 chemo treatments along with 38 rads. NED 6 months in December, 2011.
    From speaking with my radiologist, and searching the internet, I can't seem to find any agreement on how long it takes for some the damaging long term effects from treatment to go away or even if they ever will. The answers seem to range from weeks to months to years or never. Is everyone's healing process so different?

    Thanks again,
    Charles

    Yep Different....
    Hi Charles, and welcome to the forum....

    While I was STGIII SCC Tonsils, I did go through the chemo and 35 daily rads sessions bolted to the table.

    You'll find that we are all different and react/respond differently....

    Most will still be cooking for a few weeks post rads, and sloooooooowly start making improvements with both taste and salivary function.

    The process in my case to get pretty much 95% or so of both back took nearly two plus years post rads.

    Others have regained a lot back sooner, some never have and are further out than I...maybe you'll be a lucky one that will get it back sooner.

    Here's a link to the SuperThread, it offers a ton of great info;

    SuperThread

    Best,
    John
  • noelles_jim
    noelles_jim Member Posts: 12
    #9
    Charles54 said:

    Thanks
    Thanks for re-posting my information Pam. I now have some folks that I can compare notes with.

    Different is right!
    Skiffin hit it on the nose Charles. I was more than blessed, due to the size and location of my tumor they wouldn't discuss surgery. Just doing the biopsey made my ENT nervous. However, through all of the chemo and the rads I never lost my sense of taste except for chocolate and milk. Wierd I know, but the wife says I'm a little wierd anyway. Point is we are all different. The wife is right about the pain though. Most of the time it is managable, others not so much, but it never completely goes away. As for how long it will last, like you I have heard the entire range. So I have prepared myself (as best I can) for the worst, and pray everyday for something better.

    Just keep your faith and we will get there my friend. Like they say, it is the "new normal". Look forward to hearing from you. In my prayers and thoughts.

    Jim

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