Outage

[Deleted User]
[Deleted User] Posts: 0 Member
in Head and Neck Cancer #1

I haven't contributed many comments, At 47, just like OKC Native, I was diagnosed I'm just about 2 years post 33 radiation treatments/no chemo and I missed reading this forum.  Now almost 50 , OKC is older...
My two year anniversy is 3/30/20 from vocal cord cancer HPV+.  I'm doing well and have been through a gallbladder removal; vocal cord surgery; and three endoscopes with two esophagus stretches in that two years.  I read this site daily for knowledge and thank you to all of the contributors!  Special thanks to all you all!!!

The tumor was in the center of the V, so it was just radiation, no surgery.  If they would have taken it out surgically I wouldn't be able to talk.  The radiation scarring created a vocal web.(sounded like I had cancer)  My ENT referred me to a lyryngologist and he cut the web.  Vocal cord reconstruction surgery (still a bit hoarse) almost two years and I talk without the constant reminder when I speak that I had cancer.  After the follow up appointments I'm clear or NED.  

Questions??? I have a lot if them, and a I did not address them in this post .

 

Comments

  • [Deleted User]
    [Deleted User] Posts: 0 Member
    edited March 2020 #2
    I was fine without this site.

    I was fine without this site.  Logging out forever as I move on with life.  Thanks y'all!

  • ricksmithgolfer
    ricksmithgolfer Member Posts: 88 Member
    edited March 2020 #3
    Seige said:

    I was fine without this site.

    I was fine without this site.  Logging out forever as I move on with life.  Thanks y'all!

    Why you leaving site?

    I'm a little confused on why you say you are logging out forever after sharing your story yesterday. I like you really missed reading the forum while it was down for several weeks. Anyway, congrats on coming up on your 2 year mark.

    Rick

  • [Deleted User]
    [Deleted User] Posts: 0 Member
    edited March 2020 #4
    ricksmithgolfer said:

    Why you leaving site?

    I'm a little confused on why you say you are logging out forever after sharing your story yesterday. I like you really missed reading the forum while it was down for several weeks. Anyway, congrats on coming up on your 2 year mark.

    Rick

    Thank you, Rick.  I wish the

    Thank you, Rick.  I wish the best for all of the contributors on this platform. It's time for me to move forward and do other things rather then continuing to read here.

  • RR89st
    RR89st Member Posts: 3
    edited March 2020 #5
    Hello all from Bob and Renee

    I had just signed on shortly before the site went down. As my husbands caregiver, I would never have believed the treatment course could of been so full of change. My husband, Bob, started 1st round of Chemo and 1st day of radiation on February 12 this year. He has squamous cell carcinoma with positive P16 marker, primary site right tonisl (removed and biopsied) with clean margins. there is a mass in his lower right jawbone and some metasis on the tongue as wel as a lymph node on the right involved. Just after 2 weeks in he lost his sense of taste and the sore throat started. I believe looking back he went through a little depression at this time. His appetite started to wane and fatigue set in. We requested and received pain meds, magic mouthwash. Third week he seemed to come back a little. Fourth week and we thought we had learned to anticipate the changes to food needs with menu changes. Then chemo on March 4th. We were prepared as first round of chemo brought terrible heartburn. We sailed thru 2nd round with malt-o-meal and water. No heartburn. Then after a little dizzy spell on sunday after, Dr. said to add pedialyte to add more electrolytes to diet. Not good. Tore up his stomach, too much citric acid. Started wretching the day after. Call to Dr. and quit the pedialyte, but it seemed like this was snowballing. Even after extra hydration, I ended up taking him to hospital this last friday am and he will have the peg tube inserted tomorrow. The past 2 weeks have been frustrating, scary, exhausting. I am relieved frankly that he finally agreed to the peg tube. I know it wont be a walk in the park, but it has to be better than dehydraton and all that come with it. So glad the site is up. 

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,468 Member
    edited March 2020 #6
    RR89st Seems Your Husband

    Did pretty good for the most part. Just some bumps in the road to us on here that are familiar with it now. But when we were new like you and going through it well it is like nothing we ever experienced before because it is. And going through these treatments is major so accept all the help you can get. Lean on docs and your team. And now that you have the peg tube it will be easy to make sure you get enough nourishment, liquids, meds, etc. and when you don't need it anymore out it comes-Take Care-God Bless

  • RR89st
    RR89st Member Posts: 3
    edited March 2020 #7
    thank you for the kind words

    Thank you. This discussion board was a wealth of information before the adventure began. And I know I will continue to peruse and comment as time goes on.

  • ERomanO
    ERomanO Member Posts: 323 Member
    edited March 2020 #8
    RR89st said:

    thank you for the kind words

    Thank you. This discussion board was a wealth of information before the adventure began. And I know I will continue to peruse and comment as time goes on.

    Hello and welcome, RR89st!

    You may already be aware of this, but starting a new topic is the best way to get responses, unless you are contributing to an existing topic that aligns with your personal concerns.  This topic - "Outage" - and the posts by the originator are not really a good starting point for a discussion.

    There are many good folks here with lots of varying experiences, eager to help anyone with their questions or concerns.

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