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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 | Feb 7 11:55am
In reply to @gravelgertie "@albion223 when I had radiation treatments last year my mouth was dry all the time. They..." + (show)
Profile picture for gravelgertie @gravelgertie

@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!

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@gravelgertie Same here.

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kamrin | @kamrin | Feb 7 6:02pm

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

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William Olsen, Volunteer Mentor | @hrhwilliam | Feb 9 1:08pm
In reply to @gravelgertie "I wish that I would have known about Connect last year, this is my first time..." + (show)
Profile picture for gravelgertie @gravelgertie

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.

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@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.

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jfh1970 | @jfh1970 | Feb 10 1:07pm
In reply to @kamrin "Can anyone recommend something gor thick mucus that makes me gag and vomit?" + (show)
Profile picture for kamrin @kamrin

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

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@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!

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woodsy1 | @woodsy1 | Feb 14 6:09am

After further consultation with doc on Monday continued
with 1 more chemo cycle and 4 more radiation
treatments.
My throat was toast after Thurs. so didn't go back Fri. Swallowing issues. Lacking saliva.
Lots of issues with chemo too like heartburn, abdominal pains , hiccups and constipation.
Now have 3 cesplatin chemo cycles and 24 radiation treatments under the belt and I'm pulling the plug
on any more treatments, at least for now.
See what the NavDx blood test shows if I can ever get that approved or wait for the
3 months scan.
Hang in there everyone. Be your own advocate. Do the research plenty of info out there on this stuff.

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3 replies
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kamrin | @kamrin | Feb 14 10:41pm
In reply to @woodsy1 "After further consultation with doc on Monday continued with 1 more chemo cycle and 4 more..." + (show)
Profile picture for woodsy1 @woodsy1

After further consultation with doc on Monday continued
with 1 more chemo cycle and 4 more radiation
treatments.
My throat was toast after Thurs. so didn't go back Fri. Swallowing issues. Lacking saliva.
Lots of issues with chemo too like heartburn, abdominal pains , hiccups and constipation.
Now have 3 cesplatin chemo cycles and 24 radiation treatments under the belt and I'm pulling the plug
on any more treatments, at least for now.
See what the NavDx blood test shows if I can ever get that approved or wait for the
3 months scan.
Hang in there everyone. Be your own advocate. Do the research plenty of info out there on this stuff.

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@woodsy1 Hang in there. Chemo has put me through hell but im done my last one. I have 1 more radiation and then im all done. I have all the major side effects and it really tolls with your mental health. I cant keep food down only chicken noodle soup. I hope everyone a speedy recovery. Uve got this, whatever u decide. Keep us updated.

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bluechip33 | @bluechip33 | Feb 15 8:00am
In reply to @woodsy1 "After further consultation with doc on Monday continued with 1 more chemo cycle and 4 more..." + (show)
Profile picture for woodsy1 @woodsy1

After further consultation with doc on Monday continued
with 1 more chemo cycle and 4 more radiation
treatments.
My throat was toast after Thurs. so didn't go back Fri. Swallowing issues. Lacking saliva.
Lots of issues with chemo too like heartburn, abdominal pains , hiccups and constipation.
Now have 3 cesplatin chemo cycles and 24 radiation treatments under the belt and I'm pulling the plug
on any more treatments, at least for now.
See what the NavDx blood test shows if I can ever get that approved or wait for the
3 months scan.
Hang in there everyone. Be your own advocate. Do the research plenty of info out there on this stuff.

Jump to this post

@woodsy1
Let the NavDx results be your guide. Mine still showed markers over the target level so finished with only 5 chemos (2 omitted due to toxicity) and 33 radiation treatments. My NavDx now have been 0/undetectable for 2.5 years. You can do it! Magic mouthwash, Biotene and Very High Calorie Boost!

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jfh1970 | @jfh1970 | Feb 15 11:11am
In reply to @woodsy1 "After further consultation with doc on Monday continued with 1 more chemo cycle and 4 more..." + (show)
Profile picture for woodsy1 @woodsy1

After further consultation with doc on Monday continued
with 1 more chemo cycle and 4 more radiation
treatments.
My throat was toast after Thurs. so didn't go back Fri. Swallowing issues. Lacking saliva.
Lots of issues with chemo too like heartburn, abdominal pains , hiccups and constipation.
Now have 3 cesplatin chemo cycles and 24 radiation treatments under the belt and I'm pulling the plug
on any more treatments, at least for now.
See what the NavDx blood test shows if I can ever get that approved or wait for the
3 months scan.
Hang in there everyone. Be your own advocate. Do the research plenty of info out there on this stuff.

Jump to this post

@woodsy1 I tested zero on NavDX and thus was able to stop at 28 proton sessions (56 Gy) and five chemo (two cisplatin and three carbotaxol). Clean PET at three months post treatment. So your odds are likely favorable. Good luck!

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1 reply
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woodsy1 | @woodsy1 | Feb 16 7:38am
In reply to @jfh1970 "@woodsy1 I tested zero on NavDX and thus was able to stop at 28 proton sessions..." + (show)
Profile picture for jfh1970 @jfh1970

@woodsy1 I tested zero on NavDX and thus was able to stop at 28 proton sessions (56 Gy) and five chemo (two cisplatin and three carbotaxol). Clean PET at three months post treatment. So your odds are likely favorable. Good luck!

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@jfh1970
Congratulations on the 0 NavDx and clean PET scan. Awesome news !!
So about 4 months post treatment for you how has the recovery been ?
Taste and saliva production returning ? Overall how would you rate your
health at this point on a scale from 1 - 10 ? Thanks, just trying to anticipate what is to come.

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Profile picture for jfh1970
jfh1970 | @jfh1970 | Feb 16 8:25am

Thank you.
I would say my sense of taste is about 70% returned. That’s ahead of most people’s experience. Perhaps it’s due to proton versus photon. Salt was the most important sensation to recover, by far. Look forward to that day.
The dry mouth is most noticeable when eating anything starchy (I have to drink something with it), and when sleeping. Highly recommend a humidifier near your bed.
I have a continuous mild cough, which I suspect is due to lymphatic fluid draining in new directions because of radiation scarring. This is more annoying than debilitating though.
All in all I would say I’m about 75% back to normal.

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