1 month post treatment SCC

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SO, I am right at 1 month out of treatment (35 radiation with Urbitux - 6 times). What I would really like to hear from others of this same situation is about when did you receive some taste and saliva back. I have no feeding tube and can get down booste shakes. Taking the Boost Very High Calorie (530) to maintain and gain weight. My throat is on fire when swallowing, but I force down the shakes. Just want some real timeframes as to when I might have some taste/saliva back so as to start eating solid foods. Completely liquid right now.

 

Many thanks

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  • RobbT
    RobbT Member Posts: 17 Member
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    I'm 4 months out

    i had the same tx and problems early. I have about half my taste back. Not much saliva though. I was very beat up and tired for the first couple on this. It's getting better now. I got my four month scan yesterday still waiting for results .

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    welcome

    TCR,

    Welcome to the H&N forum, you’re finished, you’re alive, you’re living the dream.

    Well not so much.

    While my story isn’t what you want to hear, it wasn’t bad and matter-of-fact I was quite happy.

    I had a PEG and had it popped at 2 weeks, I drank lots of smoothies for 7 months, I was trying ALL foods ALL the time, I loved tomatoes, cucumbers and olive oil, I packed around a little Igloo Cooler full of drinks, my taste buds snapped out of it after the 7 months of mostly weird taste and feel and I returned to normal almost overnight.

    This is recovery on your time schedule; some will be ahead of you others behind you.  The pain and discomfort should subside quickly, if not, tell your team. As different as I was to old normal I did not let the new normal get me down.  After all, what are you going to do.  Stay in the game, be pleased with tiny steps forward and you should be eating (slowly) and drinking (lots) with your friends and family soon.

    Matt

     

  • soonermom
    soonermom Member Posts: 155
    edited September 2017 #4
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    My husband is coming up on 5 months post-treatment.  For him a lot of his taste is back but lack of saliva still creates challenges with eating.  He had his PEG out about 6 weeks ago.  He had significant food aversions after treatment but thankfully most of that has subsided.  He is back to work.  He still has to be very, very aware of his caloric intake every day.  We are just so grateful that he recently ate 3 eggs at one sitting.  He experienced during and post treatment, very early satiety and reduced capacity for his caloric intake.  Eating is a challenge but life is great!  He recently told me he has never been happier, so hang on better days are coming.