HPV Tonsil cancer: I'm very nervous about chemo and radiation

Posted by johnschaar @johnschaar, Jan 4, 2025

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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jfh1970 | @jfh1970 | 1 day ago

In reply to @kamrin "Can anyone recommend something gor thick mucus that makes me gag and vomit?" + (show)

@kamrin That was the worst symptom for me. It seems like it will never end, but it does (about a month after the final radiation for me). Mucisin helped a little, but I don’t want to get your hopes up. Time and healing are the only sure thing. Hang in there!

William Olsen, Volunteer Mentor | @hrhwilliam | 2 days ago

In reply to @gravelgertie "I wish that I would have known about Connect last year, this is my first time..." + (show)

@gravelgertie I wish Connect was around when I went through this as well in 2001. No one to talk to about this. I was my oncologist's first head and neck cancer patient which gained him knowledge at my sufferings. But I survived.
As for you, Welcome to our little group of folks who have literally had their head examined. I am delighted you are here to share your experience and that all has worked out well for you. I also agree 100% with your advice "if you suspect something have it checked out early, don't wait." Too many patients, and in particular "Men" wait far too long or until they can wait no longer before seeking help, often too late.
Welcome.

kamrin | @kamrin | 4 days ago

Can anyone recommend something gor thick mucus that makes me gag and vomit?

jfh1970 | @jfh1970 | 4 days ago

In reply to @gravelgertie "@albion223 when I had radiation treatments last year my mouth was dry all the time. They..." + (show)

@gravelgertie Same here.

gravelgertie | @gravelgertie | 5 days ago

In reply to @albion223 "One month post treatment (TORS surgery + 33 radiation sessions)…feeding tube placed between surgery and radiation..." + (show)

@albion223 when I had radiation treatments last year my mouth was dry all the time. They recommended getting a vaporizer to help me sleep. I got a small one and had it beside the bed blowing towards my face. It did help me. Good luck!

gravelgertie | @gravelgertie | 5 days ago

In reply to @deb26 "Can anyone give me guidance on any products or treatments to help with my husband's loss..." + (show)

@deb26 when I had radiation treatments last year my mouth was dry all the time. They recommended getting a vaporizer to help me sleep. I got a small one and had it beside the bed blowing towards my face. It did help me. Good luck!

gravelgertie | @gravelgertie | 5 days ago

I wish that I would have known about Connect last year, this is my first time here. I was having trouble swallowing and thought maybe I needed to have my tonsils looked at or removed. I had my first throat biopsy Feb. 12, 2025. They found a spot on the soft palate in the back of my mouth. So I then had a PET scan where more was found on my lymph nodes. We had several trips planned including a trip to Las Vegas to watch our granddaughters from Fairbanks play ice hockey and then a trip to Barbados to visit our oldest granddaughter at college which my ENT doctor and Oncology doctor said to take and did more tests in between trips. Then I was sent to Chalmers Cancer Center here in our town where more tests were done. I then had a feeding tube inserted in my stomach and a chemo port installed. I started radiation treatments on April 1, 2025, which was every day, 5 days a week for 7 weeks. During this same time I had 2 chemo treatments. The chemo made me sicker than a dog. I got to where I couldn't eat and had to use the feeding tube taking 6 bottles of Nestle Isosource 1.5 cal a day. I went thru cases of that stuff because it was all I could take for nutrients to keep me going. I rang the bell, that is all behind me now. I am back to eating normal and have no side-effects. My advice is if you suspect something have it checked out early, don't wait.

jfh1970 | @jfh1970 | 6 days ago

In reply to @woodsy1 "No radiation or chemo this week. Have 40 Gy and 2 1/2 chemos under my belt..." + (show)

@woodsy1 Thrush was the worst pain of the entire experience, hands down. Fortunately that nystatin rinse works quickly. Hang in there!

kamrin | @kamrin | Feb 4 3:13pm

In reply to @woodsy1 "No radiation or chemo this week. Have 40 Gy and 2 1/2 chemos under my belt..." + (show)

@woodsy1 good luck. This will all pass. Im in my 5th week and about 7 more treatments to go.

woodsy1 | @woodsy1 | Feb 4 7:09am

No radiation or chemo this week. Have 40 Gy and 2 1/2 chemos under my belt to date.
Doc discovered Oral Thrush on Monday and with the throat issues I was having Doc suggested
taking the week off after I mentioned stopping treatments altogether. Throat felt like I had sand in it. Got meds for that
and is clearing up.
First it was Shingles now Thrush.
Pretty sure I will be pulling the plug on future treatments at this point and take the blood test (NavDx)
for circulating tumor DNA to see whether or not the P16+ cancer is still present or not.
Both the med oncology and radiology doc are now on board to working with me on this de-escalated
approach to treatment, just not advocating for it
So I am grateful to them both for not continuing to pressuring me
with the "standard of care" 7/35 approach. That alone caused a fair amount of anxiety knowing the consequences.
Wii check back in with the results in a couple - three weeks , fingers crossed.