And so my Journey Begins . . .

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  • godzilla1964
    godzilla1964 Member Posts: 47 Member
    #82
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    My team (EnT/Onco/Radio) said no surgery as morbitity rates were the same for surgery/nonsurgery. I believe the survival rate is 92.5% for what we had/have. They treated my whole neck, left and right to be safe. More on left than right as yours will be. I really liked my Radiologist and trusted him.

    Chemo - My hearing went a little wonky during treatment but it's fine now though I am sensitive to loud noises. They sent me to an audiologist for a base line test but have not sent me for a follow up so far. Also a little neuropathy in my feet that is going away now. LuvTN sent me the fasting info, with links, as he fasted during his chemo. I believe he was doing the weekly chemo and still managed to fast. Contact him as he stood out to me as really doing his research.

    Big thing is stay proactive, ahead of the curve. Start putting on weight. Start doing your jaw and neck stretches. I was big on a baking soda/salt rinse for myself when everything started. Lotions for the neck once radiation starts. It's all in my timeline what I did. This board helped me develop my plan for before/during/after. A lot of good people and resources here.

  • Swoosh13
    Swoosh13 Member Posts: 74 Member
    #83
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    Godzilla, again thx so much and I’ll reach out to LuvTN.

  • Duuuukee
    Duuuukee Member Posts: 6 Member
    #84
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    @Swoosh13 Good luck with the appointments!

    It sounds like we are in similar boats. My father has 0.8cm on BOT and 1 lymph node. All of the doctors also said no surgery and the usual rad/chemo plan (rad via Truebeam, not proton). He's doing 33 rad and 6 chemo (cisplatin). His doctor recommended lower yet more frequent doses of chemo, stating that there are fewer side effects. He's a little over halfway through and hanging in there. Still eating but certain foods are challenging, and he is getting redness/burns around his throat and neck.

    I hope you guys have a smooth journey!

  • Swoosh13
    Swoosh13 Member Posts: 74 Member
    #85
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    https://csn.cancer.org/discussion/comment/1707749#Comment_1707749

    Hi Duke, sounds like they caught your father’s even earlier. My hubbie’s on PET was 1.4 cm and 2 lymph nodes all on left side. They say Stage I also HPV+ 16 which is supposed to give him a better treatment outcome. Sending prayers your way for your father’s treatment and care.

  • Duuuukee
    Duuuukee Member Posts: 6 Member
    #86
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    https://csn.cancer.org/discussion/comment/1707751#Comment_1707751

    Thanks! They say stage 1, p16+ is the best you can hope for in this situation (of course, excluding no cancer at all). Good luck and keep you posted!

  • Swoosh13
    Swoosh13 Member Posts: 74 Member
    #87
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    https://csn.cancer.org/discussion/comment/1707752#Comment_1707752

    And keep us posted on your father also!!

  • godzilla1964
    godzilla1964 Member Posts: 47 Member
    #88
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    So a few more ENT visits under my belt. ENT very happy and says everything is normal normal. My sense of taste is just about all the way back and maybe has changed a little. Saliva is getting better and better except at night if I sleep on my back, then it's desert mouth and some snoring. Jan 2024 visit with my Oncologist still scheduled and that's when I'll get my blood work done. Went to see a good heart doctor to see how that's going. Once he heard that I had had radiation he also ordered a ULTRASOUND CAROTID BILATERAL of the neck and results were good so looks like radiation had no effect on that. The ECHOCARDIOGRAM just showed some age and genetics problems "sinuses of Valsalva appears dilated slightly". So as of now, short term, looks like I came through this with flying colors, knock on wood . . . .

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    #89
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    Hello, Zilla, and so glad to hear from you and that you came through treatment and are on the other side of it so well.

    ENT is well pleased and you received good reports on ULTRASOUND and your ECHOCARDIOGRAM. Taste is almost back and just a little dry mouth, who could ask for anything more after H&N cancer treatment? Well we can, so I am asking and hoping and Praying for your Jan 2024 visit with my Oncologist to have a good report and be non-eventful. I am very confident you will do well there also.

    We celebrate with you...

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    Wishing You the Best

    Take care, God Bless

    Russ

  • godzilla1964
    godzilla1964 Member Posts: 47 Member
    edited January 23 #90
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    Had the trifecta visits last week. Primary dr, EnT, and Oncologist. Primary dr happy. EnT says I'm doing remarkable (knock on wood), and Oncologist says blood work looks good. I think she still a little sore I didn't get a PEG tube put in. So on with life I guess . . .

  • wbcgaruss
    wbcgaruss Member Posts: 2,285 Member
    #91
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    Wow Zilla, who can ask for more, such a good report from all your docs. My oh my that must make you feel good.

    I am so glad for you, I celebrate with you.

    Take Care, God Bless

    Russ

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  • GarlandCan
    GarlandCan Member Posts: 17 Member
    #92
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    https://csn.cancer.org/discussion/comment/1701362#Comment_1701362

    You’re the first person I’ve found that mentioned lichen planus. My team thinks that my erosive lichen planus caused my cancer. Is that the case with you?

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