Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Head & Neck Cancer Support Group.
Connect
@woodsy1 Sounds exactly like me four months ago. Hang in there and good luck with the NavDx!
-
Like -
Helpful -
Hug
1 ReactionOne 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 !
-
Like -
Helpful -
Hug
2 ReactionsThank 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.
-
Like -
Helpful -
Hug
2 Reactions@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.
@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!
-
Like -
Helpful -
Hug
2 Reactions@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!
-
Like -
Helpful -
Hug
4 Reactions@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.
-
Like -
Helpful -
Hug
4 ReactionsAfter 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.
-
Like -
Helpful -
Hug
1 Reaction@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!
-
Like -
Helpful -
Hug
1 Reaction@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.
-
Like -
Helpful -
Hug
3 Reactions