Time flies...

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JC F
JC F Member Posts: 74
edited December 2016 in Head and Neck Cancer #1

Haven't been here in awhile...So, exactly 2 yrs. 4 months out from the last treatment for Stage lV SCC BOT HPV 16+, with metastasis to the lymph nodes. Had the 3 cisplatin chemo marathons and the 35 rad cycle. PEG tube for a few months. Didn't have major problems with nausea or constipation at the time. Just dealing with the residual side-effects now of course. Pretty much have settled in with about 75% taste and 33% saliva returned, onc says that's probably gonna be it from here on out. Sweet never came back very good and can not do fruit very well at all, bummer, used to love all fruits. Chocolate is interesting, some taste quite good, others taste quite bad. The joy of eating just isn't the same anymore. Cannot find a mouth spray, gel, etc. or anything that works on a consistently good basis, and yes I've tried "everything" on the market. The Stoppers 4 is about the best but still not great. Residual neuropathy in the four fingers of my right hand is still there. Fatigue easier than before. Occasional stiffness in neck. No dental problems as of yet, I hit that hard with the flouride every night before bed. Been NED up to now. I guess compared to a lot of what I see elsewhere and read here I got off fairly easy. I went through the entire ordeal by myself so I consider myself kind of a warrior in that regard. Makes me sad to see what some others are going through. I remember watching 'The Revenant' when it came out and how it struck me with the absolutely ferocious resolve to survive at any and all costs..."As long as you can still grab a breath, you fight"...Stay Strong.

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  • bebo12249
    bebo12249 Member Posts: 181 Member
    #2
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    Thanks for your comments.

    Thanks for your comments. Bill

  • Lorikat
    Lorikat Member Posts: 681 Member
    edited December 2016 #3
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    Bless you!

    Bless you!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    2y 4m is a good NED

    JC F,

    You shared it with us.

    Like you I’ve tried many mouth sprays and different type of tablets. Right now I have Stoppers 4, Oasis, Biotene spray and mouth rinse, some blue xylitol lozenges, Spry xylitol mints and my favorite for bed time, Xylimelt tablets.  If I fail to take 2 xylimelts when going to bed my mouth dries up tight, so I rarely forget.

    I figure if they all help a little, which is good.

    Also, I use a fluoride rinse 3-4 times a day for my teeth.

    Matt

  • danc1962
    danc1962 Member Posts: 11
    edited January 2017 #5
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    Xylimelts. Good advice. Thank

    Xylimelts. Good advice. Thank you.

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #6
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    Good Stuff

    We always need members to post their success stories along with the problems they have so others can see that there is hope.  Being only a little over 2 years out of treatment, my guess is some of the issues will go away and others may not.  For me, just knowing that I'd be gone by now if not for modern medicine helps me tolerate any physical leftovers from my treatment.

    I hope you health continues to improve and maybe one day your taste buds will be back to somewhat normal.  Very few of us get completely healed.  Ergo the term, new normal.

     

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