And so my Journey Begins . . .
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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.
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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!
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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.
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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 . . . .
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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...
Wishing You the Best
Take care, God Bless
Russ
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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 . . .
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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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Had 6 month visit at Oncologist, she's still happy even though my WBC count was a smidge low (43 vs 45) still but I believe that me not eating/drinking like I should/can. EnT scopes me every 8 weeks and he's very happy. Other than that not much going on other than mass consumption of mega-stuff oreo's . . . .
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Well, Zilla, I celebrate with you, every clear visit with the doctor satisfied that treatment has worked and things are progressing as they should is one more step to recovery and feeling like ourselves again.
And being cancer-free again after treatment is the best feeling ever.
Though your blood count is down slightly I think it will be OK over time, sometimes it is slow getting back up to the proper level.
Wishing You The Best
Take Care, God Bless
Russ
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