Ten years after throat radiation and ongoing damage

Hi @thefarmer,
At age 39, I was officially Stage IVB T2N3M0 tonsil cancer on my left side caused by HPV and 3 infected lymph nodes. I am 17ys out (2008 diagnosis) where I had 35 rounds of Photon radiation which amounted to 70 Gy (7weeks) and 3 rounds of the platinum-based chemo Cisplatin.

I had other issues come up along the way. So be very aware of what is going on inside your mouth and throat. To name a few off the top of my head, it destroyed my thyroid giving me Hypothyroidism (makes you feel fatigued and most of the time you gain weight too) so now I have to take a pill for it for the rest of my life. Watch your bone structure and tooth decay in that region too- so make sure you go to your dentist every six months. Took me just about 2yrs to get my weight back maybe because it was mostly muscle that I lost as I am an avid weightlifter. I was 222lbs when I started and went as low as 205lbs my last week of radiation treatment but I was pretty lasered focused as I didn't want a feeding tube. Paralyzed my left vocal cord so my voice is not as loud as it once was, and swallowing has gotten worse but going to a speech/swallowing therapist has helped as I can basically eat anything just may take longer depending on what it is. Scarring of both upper lungs. Had dry mouth so I researched and found Electrical Stimulation Acupuncture in 2015 where I was tested to get a baseline and retested after 8-10 appts. And had great results- never needed to go back and has been fine ever since and I don't have to carry a water bottle with me either. Since then, I believe there are other additional avenues like sprays to help with that. My accessory spinal nerve is damaged (called Brachial Plexus Legions) which is why my left shoulder sags and trapezius muscles wasting away with winging of the scapula. Also, I would see a dermatologist at least annually to watch for any potential skin cancer from the radiation too as I received a couple spots in (November 2024) with that but it was basil cancer which is highly treatable.

Lastly, the radiation not HPV as I had it tested was my cause of getting tongue cancer in (April 2024) as its location was literally next to my left tonsil and now, I am doing a ton of rehab for that.

One thing I am finding out through research is there is this big de-escalation cancer treatments especially with radiation coming about for people who got it as a result of HPV, and I have attached some articles on it.

Good news is that I am still here and still fighting to improve on my current conditions. Hope this helps and good luck on your journey as it is a little different for everyone.

This has been helpful. Thank you.

Thank you for posting this. I am two years post treatment next week. Also an avid weightlifter and concerned about long term radiation effects. I had a neck dissection as well as radiation so concerned about carotid issues down the road. It sure beats the alternative but from this and many other posts it seems vigilance is needed to detect issues down the road.

I hear the phrase "the gift that keeps on giving" used in terms of cancer and the on-going side effects. In my case it was more akin to Pandora's box, once opened there is no going back to the pre-cancer days. If anything, for many of us this road has made us stronger.
Live your best life and be glad you wake up in the morning. So far I have had twenty-four years despite medical events which reminded me of this continuing journey. I hope we are all around for years to come but if not, it has been a great experience being alive.

MOJO, thank you. I will be seeing my local GP on Tuesday. Spent my last 2 days in Kamloops hospital because I became afraid to let go for sleep. My breathing had become so restricted. I have been prescribed dexamethasone. No help by neurologist yet, but I will get the referral from my GP on Tuesday .. after this long weekend. The ENT people tell me my next visit will be for palitive care. My questions about botox received no response .. not a word and anything outside their opinion gets a blank stare. This is Canada., At least where I live.

Hi, I just found your reply and have been searching for a physician willing to do the same type of Botox injections for me and I have been struggling as well. I had Botox for migraines and my doctor was willing to do a few in my neck but I am trying to find one that will do as you had done. If you are in NE Florida would you please recommend your physician.
Thank you kindly.

@flgrl , unfortunately I am not in Florida, I’m in Idaho.
Are you seeing a Neurologist or a PA for your Botox?
I see a PA and her husband is a Neurologist but she had Neurosurgeon look at me and he told her to put some in my neck. Then the next time I went she put it all in my neck. I think a month has gone by and my neck hasn’t felt this good in 8 1/2 years!
It’s not 100% but I can definitely deal with it.

Im in Jacksonville so if anyone knows of someone who gives Botox in neck please let me know. Im 5 years out from sinus surgery and radiation. Fibrosis in mouth, neck with neck spasms. I did meet with a neurologist a few years back but she didn't know how to treat the neck only migrains. I have asked my cancer docs but they dont know either who to send me to.Thank you

Hi. I too continue to lift 5 days a week after my radiation treatments for laryngeal cancer. The treatments have led to a pinched nerve and stiffness in my neck. This may have indirectly led to a left shoulder impingement. I have cut out direct shoulder work. I do all of my benching with the Swiss bar, and I do my squats using the safety squat bar. These seem a little easier on my neck and shoulders.

Can those of you with baroreflex failure tell me how you are doing? How long has it been since your diagnosis? What meds you are on for it? What is your quality of life like? What doctors are you seeing for it?
My husband was diagnosed 2 months ago. I just don’t think he is doing well. He has had 3 seizures due to blood pressure going so high. In the day his bp averages 75/50. He looks like he’s walking with noodles, not legs.