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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One week post treatment now and treating round # 2 of Thrush with Nystatin.
That returned last weekend of course so waited till Monday for a new RX.
Throat a little better for now can swallow food and drinks ok. Pain meds keeping me comfortably numb
and getting lots of sleep as well.
Having blood drawn for the NavDx cancer screening test next Tuesday so pretty excited that
finally got approved. Will know something pos. or neg, in a couple weeks
Been able to monitor all the weekly blood work through the cancer center portal .
Some noticeable changes but nothing off the charts so far.
These blood draw documents show a graph associated with the blood tests making it easy to follow the ups and downs.
The kidneys and WBC took the biggest hits along with the Immune system in general.
Small cuts or scrapes became infected easily from chemo treatments and heartburn/hiccups was pretty bad too.
And if you are planning to have cisplatin chemo in the future get some MiraLAX stool softener ahead of time to prevent severe constipation.
Hang in there everyone !
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2 Reactions@woodsy1 Sounds exactly like me four months ago. Hang in there and good luck with the NavDx!
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1 Reaction2 weeks post treatment now and oatmeal is my new favorite food . Mixed with fruit like bananas or blueberries, chopped smashed walnuts nuts and chia seeds.
Top with cinnamon for taste ? and your favorite milk to thin .
Trying different foods to find something that tastes recognizable is a challenge.
So far a little vanilla and chocolate flavor is starting to come through but flavor wanes after a few bites or sips.
Soups and Stews are nourishing though lack flavor .
Been dealing with thickened mucus and ongoing dry mouth issues with some success but the battle continues after the treatment. A bottle of water goes everywhere with me.
Fatigue has become an issue , not much stamina. Sleeping 10-12 hrs some nights.
Light at the end of the tunnel ? Not yet but everyday is hopefully a step closer.
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6 Reactions@woodsy1 Thanks for sharing. Ive been eating Pho, chicken noodle soup, tried chicken pot pie but was too bland. I have water and soda to help break the mucus. Dramatic cough. Are u able to taste the blueberries? I will try the oatmeal as well.
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1 ReactionHi Kamrin ,
No can't taste the blueberries or much of anything else.
The texture of food seems more important
now that most everything is tasteless. Some foods like Greek yogurt are just a turn off , maybe the texture ?
Anyhow glad you are hanging in there as best as possible.
Now we know where the term battling cancer comes from.
Got through the treatment phase with no weight loss but am dropping pounds fast now that food
is so unappealing . Energy level is quite low too.
Expecting a few more weeks of this dilemma
before a gradual turnaround in my case .
Woodsyl1, Please do not drink sodas. Your teeth have been damaged by the radiation and sodas, which contain acid, will make it worse. I gave up sodas in 2011 after radiation. You will most likely spend a lifetime of dealing with dental issues. Don't make it even worse with sodas.
@woodsy1 You're tasting more than I did at 2 week post radiation. I'm 6 months and I still do not have all the taste back. Sweets are a no go. I can taste Original Almond milk for reasons? Anything with oil in it I can taste? Strange. Egg Flour soup is a suggestion if you have a Chinese Restaurant close by.
@woodsy1 Week by week you will get there. Maybe try as many different types and flavors of food that you can think of. The worst is over,now you heal.
Not really sure what else is available. Chemo and radiation seems to be the gold standard for treatment. Is there a Memorial Sloan Kettering nearby? They have wonderful people working there that care about quality of life. Very compassionate and excellent staff.
Hello, I truly appreciate all the comments and feedback on this site. I just found out a couple of days ago that I have HPV+ tonsil cancer. Not sure of stage or if beyond the tonsil yet. My PET scan is later this week the meeting with surgeon and care team Thursday at the Mayo. Like many, I believe the treatments had me more concerned than the cancer itself. Just wanted to thank everyone for sharing their experiences and tricks to dealing with side effects. Hope you all are recovering well and continue moving forward through recovery. much appreciated
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