Thanks and Hello Everyone

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CivilMatt
CivilMatt Member Posts: 4,723 Member
I would like to say thank you very much too all of the contributors to the CSN website I’ve read and I would like to introduce myself and fill you in on my status.

First, my wife (Candy) discovered this website around the first of the year and we have both enjoyed and used it regularly. Until just recently, Candy did all the investigating as I would be relaxed in my recliner after treatments. It seemed every time I was going through tough times, she was already looking for comments of those of you that went before me, what a blessing. While Candy still frequents the website, I also have started to read and to count myself among one of you.

My name is Matt; I am 55 and first knew something was wrong on November 11, 2011 when I felt a lump on the side of my neck while I was shaving. Over the next month I went through a needle biopsy, dissection of the jugular vein to remove the (3cm) lymph node that had attached itself, removed a piece of my tongue (lower left side) and be told I had Stage 3 SCC, HPV+. During January, February and March I had 35 radiation treatments in conjunction with the weekly Erbitux Chemotherapy. (To those going through treatment (and the mask) be tough but don’t over think it and get some good music). Also, Lorazepam helps.

Currently, I am 9 weeks out, I am drinking my meals, my voice is raspy, I have only thick spit (and little of it) and my tongue is black and my taste buds are better but not good (I can’t stand food). One funny note, while in the middle of treatments I probably went through 5 or 6 bottles of “Magic Mouth Wash” (it helped me a lot). Now on occasion I use it and it tastes terrible, I guess I am getting better. Any hints on eating will be appreciated.

Once again, thank you all, you have really helped Candy and me deal with this uninvited intruder.

Matt

Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    Matt
    Welcome- and glad to have you as one of us- a H&N Survivor. I was not tongue, but others were/are. I'm unknown Primary NPC, and had full rads with an extreme chemo delivery, which did a number on my mouth- but not familiar with a black tongue. I had flesh-colored stripes running lengthwise down my tongue, but never what you describe. Hope it all returns to the best possible for you.

    The return to eating is experimental, after awhile, with trial and error, and whoops. My first eats were pancakes w/lotsa butter and syrup, and what told me after 4-months that I could eat again was a brat w/mustard, onion and relish at a company golf outing- and it was a shock how that brat tasted. Just be patient, and be glad to you are among us as a SURVIVOR! Yes!

    kcass
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Kent Cass said:

    Matt
    Welcome- and glad to have you as one of us- a H&N Survivor. I was not tongue, but others were/are. I'm unknown Primary NPC, and had full rads with an extreme chemo delivery, which did a number on my mouth- but not familiar with a black tongue. I had flesh-colored stripes running lengthwise down my tongue, but never what you describe. Hope it all returns to the best possible for you.

    The return to eating is experimental, after awhile, with trial and error, and whoops. My first eats were pancakes w/lotsa butter and syrup, and what told me after 4-months that I could eat again was a brat w/mustard, onion and relish at a company golf outing- and it was a shock how that brat tasted. Just be patient, and be glad to you are among us as a SURVIVOR! Yes!

    kcass

    Hi Matt ...
    Your "black tongue" maybe is "hairy tongue" ...look up "hairy tongue and see if this might be what you have.

    As for eating ....I am 4 months post treatment for base of tongue stage III cancer with one lymph node.......I just had my feeding tube removed recently..

    as for adviced on eating there really is none....

    You must try and eat and you eat what you can and gradually move up....for me I drank ensure, milk and my wife made me potatoe soup often. I ate the progresso light soups alot!! Soft scrambled egss (very soft as in almost runny) and I could eat pancakes with lots of syrup, etc., etc....

    Now I have moved quite a bit and am on more solid foods...but keep in mind I am now 4 months out...

    hang in there ...

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome Matt
    STGIII SCC HPV+ Tonsils and a lymphnode (Jan2009)...

    I think that Denny might have had something with the black tongue thing if I remember correctly... I know he had hair growing on it or something weird like that also...LOL.

    Eating will come at it's own pace, as will saliva and taste more than likely.

    If you an your wife haven't found the SuperThread, here;s the link...another great thread with tons of good information;

    SUPERTHREAD

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Matt
    You are right in finding the right place for help; I wish I knew about CSN back in 2003 & 2005 when I was going through my treatment. My wife and I had no idea what to expect and our doctors were very little help. I am glad to hear you are finished with your Rad & Chemo and it sounds like you are doing very well being only two months out of treatment.

    Welcome to the family my friend
    Hondo
  • KTeacher
    KTeacher Member Posts: 1,103
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    Cancer Chef!
    You might want to check out Rebecca Katz. Good info on her website and wonderful information in her cookbook The Cancer Fighting Kitchen. She has really researched and found ways to make food edible for us. Good luck to you in the journey to eat.
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    KTeacher said:

    Cancer Chef!
    You might want to check out Rebecca Katz. Good info on her website and wonderful information in her cookbook The Cancer Fighting Kitchen. She has really researched and found ways to make food edible for us. Good luck to you in the journey to eat.

    BIG THANKS!!!
    Thanks for the response and the ideas. I really do try to eat, it is just miserable. If I am not careful, I start to equate food with bad tastes and not how it use to be. Candy and I use to enjoy going out to eat and looking for the “Great Hamburger”.

    As funny as it sounds, I am honored (if not tickled) by each of your response. I was totally blown away from these life changers that accompany cancer. My emotions surface a lot more often then they use to and I truly see the importance of people on the CSN website. Bless each of you.

    Matt
  • Greend
    Greend Member Posts: 678
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    Black tongue
    I remember you guys giving me a hard time over my black tongue and the fact the Dr said not to worry and that was the end of my questioning. I still have it (sometimes I can scrape some of it off) and still don't know why (mine is not hairy tongue). Doesn't seem to do any harm after all these months so I'll just keep telling folks I'm part Chow.
  • patricke
    patricke Member Posts: 570
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    Hey Matt, congratulations on
    Hey Matt, congratulations on getting through treatment, that was the roughest part of the process. It sounds like your recovery is going pretty well; here's wishing that it only gets better.

    PATRICK