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HPV Tonsil cancer: I'm very nervous about chemo and radiation
In June of 2024 I was diagnosed with HPV+ tonsil cancer. I have been doing an alternative approach but believe it is not working and can not find a doctor in my area that will work with me and order a second pet scan as I am not following THEIR protocal. It is all Chemo / radiation or nothing! Basically my wife is no support if I go with the traditional routine, and insists that what I am doing will work.
I am very nervous about chemo and radiation. What else my be available?
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@rllampton Hello and welcome. One should consider that much of what is talked about here are problems and issues patients have or are dealing with. Seldom do we have comments from those who breeze through. However those people exist as well.
While likely you will physically experience uncomfortable or unpleasant side effects, these may be short lived. Mentally however most patients experience a life altering journey, often for the better. I wish you well and good healing.
Feel free to begin your own specific “discussion” as it likely will draw more attention to any specific issues which you may be working through.
You are in good care with Mayo.
Courage.
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3 Reactions@rllampton
Hello, sounds like you are in good hands and moving forward at a good clip
which is especially important. This particular type of cancer is rather fast growing
so getting into treatment early is quite beneficial.
How did you happen to find out you had tonsil cancer ?
My particular case took 3 mos from diagnosis to treatment, too long, but nothing I could do to speed it up. Long story there.
Good news is this particular cancer responds well to treatment unlike some others so you
have that going for you although its not a cakewalk by any means.
Good luck and keep us posted as the process plays out.
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1 Reaction@rllampton Please keep us updated.
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1 Reaction@woodsy1 a couple different times over this winter. I noticed a fairly large infection in my throat. Thought it was just your typical sore throat. A little bit then it got kind of large and gross looking so I went to see my family practitioner agreed it was not normal looking and sent me to ENT they did the biopsy just last week and found out it was cancer.
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1 Reaction@rllampton
Thanks just curious . Heartbreaking words " you have cancer". But we seem to rebound
after a spell and just do what needs to be done , get into treatment.
My dentist noticed a lump in my throat and said you need to see an ENT. A week later I
got those heartbreaking words.
Funny thing is I kept busy through all of it except a few down days after 3-4 weeks of chemo radiation.
Was able to function normally through most all of it drove myself to and from the facility etc. So its all doable like so many others here that have gone before us can tell you.
Try to keep a good attitude and your chin up and you should do ok.
,
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2 Reactions@woodsy1 thank you, yes so far I don’t know much other than that it is cancer. PET scan on Thursday and then a meet with care team. So for now just learning a bit about this type of cancer and once I get through the scan, hopefully we can put a plan in place.
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1 Reaction@rllampton
Great that the process is moving along quickly for you.
Research is your friend and going into treatment with good knowledge of this particular cancer is to your benefit as the Drs. and staff often don't have time to cover all the toxicities that something like chemoradiation comes with.
The long term ones especially.
Cancer treatment is a very busy field these days.
Hopefully you can get into a de-escalation treatment program which Mayo may offer depending on the stage of your cancer and number of lymph nodes affected .
The less chemo and radiation cycles the less potential long term damage to healthy cells .
Disclosure: I didn't know anything about cancer 5 mos ago.
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2 ReactionsHello @deb26 i ma 7+ years out from HPV tonsil cancer surgery, radiation & chemo treatment. Dry mouth has always been an issue for me. My partner, Jeanne, found a mouth lozenge called Oracoat XyliMelts for Dry Mouth Night Time or Day. They stimulate saliva production. I get them on Amazon. The drug stores have them as well. They may be worth a try.
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4 Reactions@rllampton was it HPV cancer and where was it located? I had HPV tonsil cancer. I am seven years out following surgery, radiation, and chemo.
What is your treatment plan?
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1 Reaction@lummy Xylimelts worked great for me.!
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1 Reaction