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
@harleytiger I had an OT who did Myofascial Release Massage on my neck, chest and shoulder. It was wonderful and really loosened up my face and neck. Even my speech improved!
@harleytiger That stiff neck stuff just seems to hang on for years no matter what I did to try and ease it some. A yawn or specifically a sneeze would sometimes bring me to my knees nearly. It has gone away completely but I am now twenty-five years out of radiation. I guess the solution along with time is to keep stretching it.
I hope you don't have the many lasting side effects I have had such as osteoradionecroisis and having my jaw rebuilt five years ago. That was fun. At least the recovery was much faster. My original radiation oncologist had me as his first head and neck patient. Someone had to be first and at the time I didn't know better to ask. As a result, he learned and I paid the price. Water under the bridge. I am still here and doing fine. I want you to enjoy the years to come like me. By this time next year you should be doing much better. You might even go an entire day without remembering you had cancer.
@harleytiger It definitely sounds like Fibrosis. Unfortunately neck issues are a big part of post radiation for many of us. I didn't have it in my jaw, just the neck. I'm 16 months post treatment, 35 rounds and my neck is always stiff and achey with limited motion and depending on which doctor I ask, I'm told this may be forever.
To fight it or at least keep it in check, I do ten minutes of neck exercises every morning. The neck pain is annoying but in my case NOT debilitating. In fact I play reasonably competitive ice hockey in an old timers league twice a week at 65 years old! So I'm happy to keep doing my exercises, whether they're working or not but at least it doesn't seem to be getting worse which I'm told can happen.
Regarding PT, I received PT specifically for neck Fibrosis for about 8 weeks after treatment and can't really say that it helped much.
BTW At two months post treatment I was a mess on many levels and thought I'd never have any semblance of a normal life again. Presently I'd say I'm 90% back to 'normal' and thoroughly enjoying life. You appear to be doing much better than many of us at that stage. Hang in there and allow time to pass it's a VERY slow recovery but you WILL gradually and continuously feel better. All the best!
@johnbonani Thank you John for replying and your comments really help. I'm very active too and I just want to nip this stiffness in the bud but it doesn't look like that's going to be the case. I do stretch my neck in the morning and anytime I think about my stiff neck. In other words, very often.
I know I should be more patient but it's not one of my virtues. I am doing well considering how soon I'm out and I'm very grateful. I'm wanting to be back to normal too soon. I read how others are really struggling and my heart goes out to them. I should count my blessings, move forward, and trust those that have been through this. Now that I know my stiff neck is here for a long time, I need to do what I can and forget about it.
Honestly, as big as the HPV cancer issue has become on our age group, there should be more organized Support Groups on a local basis. I have two Oncologists who both told me that HPV cancer is becoming more prominent and they are seeing in people in their 80's. I had two ENT doctors tell me the same thing. I'm still dealing with dry mouth, but my tastes are starting to slowing come back. I bought all the Xylimelts tablets you suggested. I also bought All Dry Mouth Spray and I found that very handy. I found that on my own. I also use Act dry mouth wash. I'm listening to you and again your experience helps a lot. Thanks, Tim
@harleytiger
Hi Tim,
I have the same neck stiffness and with some pain as it may be part of our spinal accessory nerve too which can be damaged from the cancer treatments. I get the similar PT as John B. received and that seemed help some but now only go once every 2 weeks due to insurance coverage.
So I researched some and found this device on Amazon called Hugterra for $62 which does three things massager, electrical stimuli, and heat at the same time for 15mins. Could be a coincidence as I am now 16 months out from surgery but after a month or so I feel the feeling in my neck and pain has definitely reduced.
Best Rob