Intro

Runningwahine
Runningwahine Member Posts: 15
in Head and Neck Cancer #1

Hello, new to the forum. diagnosed in March SCC of the tongue, Stage IVA, 4 positive left lymph, PET cleared the rest of the body.  In April underwent a hemiglossectomy, with a free flap reconstructed from a thigh graph, also had a tracheotomy, right and left neck dissection to remove positive nodes and the right was removed in order to reduce reoccurrence, they had to open me back up for an infection and wash it out, also shaved my flap down in mid April. As of today, I have had 12 (33)RADS 1 (3) chemo session. Sadly, I have already had the ugly side of treatment show its ugly head. Mucous has set in, sores in my mouth, blisters on my neck and hair is falling out.  I have prepared myself, I know that it will just get worse. Still doing shakes by mouth. Can still eat but it's not worth the trouble of having to clean my mouth out after. I have had my PEG tube since April.  Still waiting for my tongue to shrink and flatten out, it is still very swollen. I have been silently following everyone, so thanks for all the tips! 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    welcome

    Runningwahine,

    Welcome to the H&N forum, sorry you are here, but it is a good place  to visit if you have questions.

    Sounds like you are moving right along with treatment and side effects, you just can’t dodge those pesky issues.

    I too was stage IVa, scc, bot, 11 lymph node, hpv+ (surgery, rads and Erbitux). I am over 4 years post NED and my “new normal” is delightful.

    Feel free to ask or say anything, most of us will identify with you.

    And don’t forget to keep drinking and swallowing often.

    Matt

  • cardoza33
    cardoza33 Member Posts: 81
    #3
    Good luck.  You are almost

    Good luck.  You are almost half way there.  Well over half if you consider the surgery.  I was in your position only a few months ago.  I feel great today.  I am still struggling with eating normal food, but I feel good so I am not complaining about that.  Just keep moving ahead each day.  Dealing with the side effects, going to treatment each day, keep a positive attitude and eventually you will be back to your life.  We are here for any additional support you may need.  Keep it up!

  • Runningwahine
    Runningwahine Member Posts: 15
    edited June 2016 #4
    CivilMatt said:

    welcome

    Runningwahine,

    Welcome to the H&N forum, sorry you are here, but it is a good place  to visit if you have questions.

    Sounds like you are moving right along with treatment and side effects, you just can’t dodge those pesky issues.

    I too was stage IVa, scc, bot, 11 lymph node, hpv+ (surgery, rads and Erbitux). I am over 4 years post NED and my “new normal” is delightful.

    Feel free to ask or say anything, most of us will identify with you.

    And don’t forget to keep drinking and swallowing often.

    Matt

    Thanks Matt!

    Thanks Matt!

    I can't wait until I can concentrate on my "new normal" 

    I take little sips of water throughout the day, and I have to flush my tube with water. So I'm hydrated, thank goodness.

    Drinking was not an issue until the tastes buds altered and everything taste awful, besides water and soda. Soda is a no go, the burning sensation is not worth it.

     

  • Barbaraek
    Barbaraek Member Posts: 626
    edited June 2016 #5
    For blisters on the neck

    Try Silvadene cream - they use it for burn patients and it is very effective.

    Welcome to our "family" though we are sorry you find it necessary to be here. We'll be encouraging you all the way to the finish line. Don't hesitate to ask questions or ask for support - that's why we are here.

    barbara

  • Runningwahine
    Runningwahine Member Posts: 15
    #6
    cardoza33 said:

    Good luck.  You are almost

    Good luck.  You are almost half way there.  Well over half if you consider the surgery.  I was in your position only a few months ago.  I feel great today.  I am still struggling with eating normal food, but I feel good so I am not complaining about that.  Just keep moving ahead each day.  Dealing with the side effects, going to treatment each day, keep a positive attitude and eventually you will be back to your life.  We are here for any additional support you may need.  Keep it up!

    Thanks for the support! Some

    Thanks for the support! Some days are just harder than others, but I will pull through! I have a great support system!

     

  • Runningwahine
    Runningwahine Member Posts: 15
    edited June 2016 #7
    Barbaraek said:

    For blisters on the neck

    Try Silvadene cream - they use it for burn patients and it is very effective.

    Welcome to our "family" though we are sorry you find it necessary to be here. We'll be encouraging you all the way to the finish line. Don't hesitate to ask questions or ask for support - that's why we are here.

    barbara

    Thank you Barbara! I will

    Thank you Barbara! I will definitely ask the Doc about the cream.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    sip & swallow often

    Runningwahine,

    Hydration is good, but not the reason I recommend drinking water and swallowing often.

    I do not want you to forget  or to lose your ability to swallow.  Problems with swallowing are very real and can require retraining if necessary.  Swallowing was something drilled into me in this forum before I started treatment.  I thought “how could I forget to swallow”.  It was simple advice which paid huge dividends.

    Good luck,

    Matt

  • nino5
    nino5 Member Posts: 29
    #9
    Runningwahine said:

    Thanks for the support! Some

    Thanks for the support! Some days are just harder than others, but I will pull through! I have a great support system!

     

    hi

    Hey i would like to share experiences with you.  I just sent you a private message 

  • SusanUES
    SusanUES Member Posts: 125
    #10
    Yes, it is indeed an ugly treatment...

    So sorry you are in the middle of this really unpleasant treatment.  I offered up some shake suggestions in a thread above to help you keep the weight on...I know it's tough.  Sending you healing vibes and keep posting...everyone is here for you.

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