Sleepless in Utah

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Good morning all, happy holiday! Im Aaron from Utah. stage three base of tongue with hpv+.  Just finished my third week of six currently in radiation. I havent slept more than 3 hours at a time in over a week. Dry mouth and mucustitus prominent. Ive been drinking Orgain protein mixed with almond milk for my only nurishment, also for about 7 days. Energy levels dropping fast. My cheeks and tongue feel raw and swollen, and my ibuprophen are getting harder to swallow. lost 8 pounds since radiation started. right now just trying to focus on nurishment. my water bottle is my constant sidekick, but still constantly gaging on flem. Im expecting all of these issues to get much worse in the coming weeks. Im glad to have a new community to lean on for feedback and support. I hope to contribute as well. 

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  • wbcgaruss
    wbcgaruss Member Posts: 2,309 Member
    edited May 2019 #2
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    stonesack Welcome

    To the club, no one wants to be in. Sounds like you are starting to experience some of the side affects that treatment brings. Hang in there and if you don't know about it check out the Super thread at the top  of the head and neck page-God Bless

  • ByeByeCancer
    ByeByeCancer Member Posts: 54 Member
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    Hang in there!

    Hang in there!  I wanted to suggest that you look at Benecalorie to mix into your Orgain drinks!  You can find it on Amazon...it is like a tablespoon of goo..but it is high calorie goo (I think like 300 calories).  My husband got to where he couldn't swallow much, but wanted to keep calories up so I made little smoothies out of Orgain (I bought the ready-to-drink variety), benecalorie, and some heavy whipping cream.  Lots of calories in those.  I think it really made a difference in his energy level to keep the calories up.  You can read more of his story in my About Me section!  He is doing just fine now...finished treatment in November 2017.  This will be behind you before you know it.

  • stonestack
    stonestack Member Posts: 5
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    wbcgaruss said:

    stonesack Welcome

    To the club, no one wants to be in. Sounds like you are starting to experience some of the side affects that treatment brings. Hang in there and if you don't know about it check out the Super thread at the top  of the head and neck page-God Bless

    Thank you that means alot to

    Thank you that means alot to me. 

  • stonestack
    stonestack Member Posts: 5
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    Hang in there!

    Hang in there!  I wanted to suggest that you look at Benecalorie to mix into your Orgain drinks!  You can find it on Amazon...it is like a tablespoon of goo..but it is high calorie goo (I think like 300 calories).  My husband got to where he couldn't swallow much, but wanted to keep calories up so I made little smoothies out of Orgain (I bought the ready-to-drink variety), benecalorie, and some heavy whipping cream.  Lots of calories in those.  I think it really made a difference in his energy level to keep the calories up.  You can read more of his story in my About Me section!  He is doing just fine now...finished treatment in November 2017.  This will be behind you before you know it.

    Thanks bye bye, Im gonna

    Thanks bye bye, Im gonna check it out on amazon as soon right after messaging. I hope you and your husband are both doing good. 

  • ERomanO
    ERomanO Member Posts: 319 Member
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    Welcome, stonesack!

    The side effects through and just after the treatments are the worst, but there is light at the end of that tunnel.  For now you make whatever adjustments you need to in order to get through to that light.  A good dose of patience is also in order!

    I am just shy of my 1 year mark and feel pretty darn good, even with some lingering side effects.

  • stonestack
    stonestack Member Posts: 5
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    ERomanO said:

    Welcome, stonesack!

    The side effects through and just after the treatments are the worst, but there is light at the end of that tunnel.  For now you make whatever adjustments you need to in order to get through to that light.  A good dose of patience is also in order!

    I am just shy of my 1 year mark and feel pretty darn good, even with some lingering side effects.

    Thanks for the words of

    Thanks for the words of encouragement. Did you lose taste for any of the food you previously enjoyed? From what Ive been reading everyones side effects can be vey different. Ive just always been high energy and on the move. and havent really ever disliked flavors any food til now. I appreciate your support.  Thank you very much

  • ERomanO
    ERomanO Member Posts: 319 Member
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    Thanks for the words of

    Thanks for the words of encouragement. Did you lose taste for any of the food you previously enjoyed? From what Ive been reading everyones side effects can be vey different. Ive just always been high energy and on the move. and havent really ever disliked flavors any food til now. I appreciate your support.  Thank you very much

    Taste changes

    While I was going through treatments I couldn't eat ANY carbs, and in general had very limited taste.  Most taste has come back but pasta sauce doesn't taste quite like it used to, and bread doesn't seem to have quite the same appeal, but that doesn't stop me from eating spaghetti or sandwiches.  Many people have experienced fatigue, but I have not... at least not enough to keep me from being active.

  • whoisjohngalt
    whoisjohngalt Member Posts: 30
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    Thanks for the words of

    Thanks for the words of encouragement. Did you lose taste for any of the food you previously enjoyed? From what Ive been reading everyones side effects can be vey different. Ive just always been high energy and on the move. and havent really ever disliked flavors any food til now. I appreciate your support.  Thank you very much

    everyone's experience is different...

    I'm also 1 year out of treatment this coming June 1st. I'll bet there are as many unique experiences as there are fingerprints, LOL. I survived on Scandia shakes, everything else tasted revolting to me. Still lost 40 lbs and much of my energy. Still, my side effects were relatively easy compared to many on this site. My taste buds have not returned to pre-cancer treartment levels. Most of my favorite foods are tolerable for the most part but nothing tastes really good. Spicy foods have the most taste for me.

    You can search multiple topics here and gain a wide perspective and appreciation for the trials and tribulations of others. It was a life buoy for me during my entire journey. There are many, many wonderful people here as you have probably discovered wiling to answer questions and share their experiences. Before you know it you'll be the one helping the newly diagnosed with their journey as well.

    Keep the faith as you experience highs and lows during your recovery, often on the same day! All of us here support you and pray for a full recovery.

    God Bless!

  • ERomanO
    ERomanO Member Posts: 319 Member
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    In addition to food tasting bad

    I found that after a few weeks into my treatments I couldn't stand the taste of water.  It was awful, but I had no choice but to drink as much as possible, especially during chemo weeks.  I always had bottles of water in th fridge to take with me on the hour long drive up to the hospital, but one day I forgot to put more bottles in the fridge and had to take water that was room temperature.  Well lo and behold!  As it turned out, the warm(ish) water was far more palatable than cold water.  Who knew, right?

    My point is that life for me was a never ending series of adjustments.  Something would taste just fine one day, and terrible a couple days later.  Once something went on the terrible list it stayed there until until I began coming out of the dark and back into the light.

    I didn't find out about this site until a few months after finishing treatments.  The good people here probably would've helped me out a lot along the way, but I got through it nonetheless.