54 year old male have questions about HPV cancer

Posted by rs800 @rs800, Oct 5 5:13pm

I believe I have HPV cancer in my throat. I’m at 54-year-old male, and I have questions of people that have survived it.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

I was diagnosed in Feb 2024 with tongue/tonsil cancer due to HPV. I underwent 35 rounds of Radiation. I am almost four months post treatments. Was very painful to eat and drink water. I was on Tramadol and Gabapentin for the pain. I could only consume no salt Cream of Chicken soup at first and that was with using "Magic Mouthwash" to numb my mouth for 5 minutes or so. The pain seemed to peak 6 weeks after treatment ended. It's only in the last two weeks (3 1/2 months post radiation) that I stopped the pain pills and can eat a few more things. I also was extremely fatigued for two months. I lost over 40 pounds (167lbs to 122lbs). Did not have a feeding tube, which I would avoid unless it's a last resort. I'd rather eat through the pain.
I have constant dry mouth and continual mucus in the back of my throat. It is getting better, but very slowly.
I actually ran and worked out all during my treatments, but it was getting very difficult. I stopped all exercising post treatment due to weakness and fatigue. Started my running and workout routine a few weeks ago (albeit slower and weaker) that I did prior to radiation treatments. My strength and endurance is slowly coming back.
Bottom line is expect pain, but there are ways to manage it and force yourself to eat and avoid the feeding tube. It will slowly get better if you follow the doctor's guidance. Last thing is use salt water and baking soda rinses as well as a high flouride prescription toothpaste. Your teeth will be prone to cavities, especially with a lack of saliva. clean them (floss and rinse) every time you consume food. Good luck and let us know how you are progressing

REPLY

My experience is very similar to @runner61627 with one big difference...I loved my feeding tube!

I'm 64 years old had HPV related cancer of the tonsil. Underwent 35 sessions of radiation and 6 rounds of cisplatin chemotherapy.

I am presently 15 weeks post treatment. Like others have said the first 8-12 weeks or so post treatment are the worst. I had terrible phlegm and throat pain that I thought would never get better. But it did. At 15 weeks the thoat pain is gone and I'm eating only by mouth (the tube is coming out next week) however I have difficulty swallowing and can only eat some soups, yogurt and a few other soft foods and every bite has to be washed down with a liquid. Quite frankly it was much easier to maintain my weight with the feeding tube. I'm honestly not sure when or if this will get better. It seems to depend on which doctor I ask and answers always somewhat vague. So I'm dealing with this new normal for now and remind myself every day that it's better than the alternative.
Anyway, to rs800 if you do find out it's HPV cancer the good news is the rate of survival is very high. The treatment is definitely challenging as you by now have heard and recovery can take many months even years but you will recover and I'm thankful every day that while my life has changed somewhat I'm still alive to enjoy it.
All the best to you.

REPLY

I have posted this a number of times, but folks seem to feel it is of value. So here it is again.

I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had multiple cleans scans.

I wrote a blog during my experience (non-revenue generating) if you would like to review it. You can read it at:
https://stevefleurysblog.com/2020/10/29/part-1-the-beginning/
More importantly, my wife wrote a wonderfully insightful post of lists and non-advice advice.
https://stevefleurysblog.com/2021/01/05/lists-and-non-advice-advice/

REPLY
@stephenrfleury

I have posted this a number of times, but folks seem to feel it is of value. So here it is again.

I had SCC on the base of my tongue and a couple of lymph nodes in the fall of 2020. I had chemo and proton radiation, since have had multiple cleans scans.

I wrote a blog during my experience (non-revenue generating) if you would like to review it. You can read it at:
https://stevefleurysblog.com/2020/10/29/part-1-the-beginning/
More importantly, my wife wrote a wonderfully insightful post of lists and non-advice advice.
https://stevefleurysblog.com/2021/01/05/lists-and-non-advice-advice/

Jump to this post

May I ask what stage your cancer was? Glad all is well.

REPLY

It was stage 2. I had SCC on base of the tongue and in 3 lymph nodes.

REPLY

Thank you getting back

REPLY
Please sign in or register to post a reply.