Year and a half update

PJ47
PJ47 Member Posts: 376
in Head and Neck Cancer #1

Hi folks,

Have been doing well since completing surgery and radiation for stage IV SCC BOT HPV 16+ in Dec 2013.  Had one PET 4 months after, and am scoped and examined every 6-7 weeks and so far so good.  Have about 99% energy back, decent saliva and taste buds.  

Not sick with a cold or flu since finishing rads, but perhaps have been doing too much lately.  Traveled to Winter Haven Florida to help my 92 yo Aunt get into Hospice a month ago and then worked  full time at LCFH Hospice Children's Camp and managed to pick up a cold virus.  Well that must have tipped the scales for my immune system, and now I have shingles.  I knew something was up when I started to feel the spinal accessory nerve on the left side of my neck where I had my dissection, then the next day a few red hive like blotches appeared.  Immediately went to an urgent care to start antiviral Valtrex, and am also taking massive doses of Vitamin C, L-Lysine, and B12.  Found a new use for my leftover silvadine cream used on radiation burns; it works great on the shingles rash!  

Only other issues have been to repair radiation damage to teeth (from lack of saliva) with 9 small cavaties formed and filled so far and cataract surgery on both eyes done (did not need cataract surgery prior to rads).  I see 20/15 in my good eye now and feel like the bionic woman. 

Think of all yall often and wishing everyone the best recovery possible.  Looking forward to Dec 2015 for the 2 year mark, for which I am hoping to be NED.  So many of you brave souls give me hope.

Living and enjoying  each day as if it was my last,

PJ

Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    #2
    New normal

    sounds like your new normal is great.  Bionic woman, Super woman, do listen to your body, give it a rest sometimes.  Watch out for those little germs, that is what my sister calls her grandchildren when they have bugs.  Shingles, yuck, glad you had something to help, I used a lot of liquid Benadryl.

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #3
    shingles...."I wouldn't wish

    shingles...."I wouldn't wish on my worst enemy. I've had them twice and was in so much pain and misery.my daughter got them too pretty bad. It's wonderful you have your saliva almost back and your taste buds. Did your taste change, mine has gone to the sweet side all savoury taste funny not like I'm expecting. My smell is ok with savoury, it makes my mouth water but when I taste it I don't recognise it. I guess like a baby I'll have to learn tastes all over again. I couldn't eat or drink for two years now my throats been opened I drink ensures most of the time and coffee. Coffee tastes as it should. Congrats on being energetic and enjoying life.

  • wmc
    wmc Member Posts: 1,804
    #4
    Shingles...............So sorry

    So glad you are doing good, except the shingles. Had them when I was 14 and will never forget. I have been advised NOT to get the vaccines. Thoughts and prayers 

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    pj, glad you're doing well

    pj, glad you're doing well and i hope the shingles and other stuff is gone.  thanks for stopping in, its always good to hear from our friends.  continue living and showing life who's boss!

    God bless you,

    dj

  • MrsBD
    MrsBD Member Posts: 615 Member
    #6
    Update

    It sounds like you are doing really well despite a few bumps in the road. Those little kid germs do pack a punch! Thanks for sharing your story and I hope you continue to improve.

  • PJ47
    PJ47 Member Posts: 376
    #7
    debbiejeanne said:

    pj, glad you're doing well

    pj, glad you're doing well and i hope the shingles and other stuff is gone.  thanks for stopping in, its always good to hear from our friends.  continue living and showing life who's boss!

    God bless you,

    dj

    not sure i am the boss

    Got taken down a few pegs with the shingles, guess I have to give up working with the children but will miss it.  They are so adorable.

    Thanks DJ

    Blessings to you too

    PJ

  • PJ47
    PJ47 Member Posts: 376
    #8
    wmc said:

    Shingles...............So sorry

    So glad you are doing good, except the shingles. Had them when I was 14 and will never forget. I have been advised NOT to get the vaccines. Thoughts and prayers 

    Bill

    Thank you Bill

    Had the vaccine discussion 6 months after rads and my MD and the Pharm D thought my immune system could not manage the vaccine and that I could get the shingles from it so I opted out.  

    Take care,

    PJ

  • PJ47
    PJ47 Member Posts: 376
    #9
    jackflash22 said:

    shingles...."I wouldn't wish

    shingles...."I wouldn't wish on my worst enemy. I've had them twice and was in so much pain and misery.my daughter got them too pretty bad. It's wonderful you have your saliva almost back and your taste buds. Did your taste change, mine has gone to the sweet side all savoury taste funny not like I'm expecting. My smell is ok with savoury, it makes my mouth water but when I taste it I don't recognise it. I guess like a baby I'll have to learn tastes all over again. I couldn't eat or drink for two years now my throats been opened I drink ensures most of the time and coffee. Coffee tastes as it should. Congrats on being energetic and enjoying life.

    So glad to hear you can swallow again!

    The sweet taste returned first.  Tomato sauce was horrid for a long time but not too bad now.  I still cannot manage thai food, but maybe someday.  The front of my tongue manages it but when the curry gets to the BOT scar, yikes, coughing fit ensues.  Yes my sense of smell has been affect some too.

    My shingles are tolerable with the valtrex on board and all the vitamins.  Interesting how it selected the nerve that was damaged during the neck dissection.  Opportunistic little bugger!

    Still think the pain from the TORS and neck dissection and rads was way worse so I cannot complain.  

    Take care and glad you can taste and "smell the coffee".

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #10
    20/15 eye see

    PJ,

    Glad to hear you are 18 months in the clear, Ms. NED.

    Now this living each day like it’s your last, do you eat a lot of pie and ice cream?  It’s a well-known adage “eat like there’s no tomorrow”.

    I received a shingles shot right after treatment ended, but I did get a bad sore throat.   Luckily, I had one bottle of magic mouthwash stored away, what a lifesaver that was. If I ever have another sore throat the first thing I’m going to do is visit my radiation oncologists get a new script for magic mouthwash.

    See you later, I have to go find some pie.

    Matt

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