Hi Folks, I have been a long time lurker in this group. I can’t say enough about the people that post their experience - shout out to @hrhwilliam and so many others. I also followed @jkhagen1 as she was just a few weeks ahead of me.

I had left tonsil SCC and one suspicious lymph node. I was originally stage 1 going into the de-escalation study but then the review board was not sure about if the growth extended into the tongue muscle. So there was a last minute change, a little un-nerving to say the least, which led to the basic 35 rounds and 6 week protocol. I’m not sure I would have been the person to end treatment without being absolutely sure so I think it all worked out.

My experience with treatment was better than I anticipated yet still tough. I was shown the food hierarchy that had a chicken sandwich as the goal and I set out to eat that every week of treatment. I never reached a point where the pain was too much. For me it was loss of taste. I have a hard time eating something with zero flavor. So for two weeks (like week 7 & 8) it was hard. I lost a little weight (I’m 6’3” and 165Lbs so little to give) and that got some attention. I went to shakes just to supplement meals. But I always tried to eat something to exercise my throat.

I stayed active with pilates and walking with my wife at the local indoor mall along with biking. My labs were good during chemo yet most doctors don’t want you doing anything that could lead to a fall (broken bones). But by the 7th week I needed to cut down on activity to help with my weight.

At 7 months out, I’ve had 2 PET’s at the 3 & 6 month interval. First was very good and second was better - all primary sites were clear and it was great to see the screen during my scoping that showed all normal looking throat tissue. The body is amazing.
I have some general uptake in my tongue which I’m told is normal but of course needs to be run to ground. At 6 months there’s still a lot of activity and healing going on.

I’m not sure our medical care team would approve but I uploaded all my test results, labs and even pictures into an AI tool to get feedback. At Mayo, you get results from scans and labs before you get to your car in the parking lot. So it can be helpful if you’re wondering what it all means while you wait for a doctor call or appointment. Again, proceed with caution on this.

I have read that healing is like two steps forward, one back. I agree. It’s not been a straight line for me. I feel like my mouth goes through a healing cycle every 1-2 weeks where the inside of my cheeks feel strange and a tiny layer off skin peels off. I’m not sure if it’s triggered by foods. I try to eat diverse flavors yet I stay away from really spicy food (which I was never good at anyway) and acidic foods with vinegar, etc.
I recall ketchup tasting horrible at the height of treatment. All I tasted was the vinegar. Now it’s maybe 50% normal and tolerable.

My taste is mostly back to normal. I didn’t have any metallic taste but lost sweet early on and it has yet to come back. Sadly chocolate taste like not much. I also have some dry mouth. I tried acupuncture but no success. I used the xylitol tablets at night and Therabreath lozenges during the day if necessary.

I don’t really notice neck pain or jaw (opening wide) pain but it’s there if I press my range of motion. If I sleep wrong, it can trigger sore muscles in my neck and that can get me concerned that something else bad is going on.

Oh, and I wear the head/full neck mask at night when I sleep. I really haven’t had too much external lymphedema but this helps along with daily manual massage. I’ve been told after completing a couple throat exams and a swallowing test that I don’t really have any or much internal lymphedema.

So for me, and like many of you, it’s waiting and hoping for some (in my case sweet) taste to return and a little saliva. I think I need to do a better job with rinses as I really only did that back in the treatment phase to combat sores - which I no longer have had since the treatment ended.

One last comment. Mayo was amazing. I miss seeing all the people. I felt the safest when I was there with lots of eyes on me. The actual radiation treatments went fast and I seemed to tune out the fact that my face and shoulders were locked so tightly in. In fact, I routinely fell asleep which had me concerned that my mouth bite would shift. They of course assured me they monitor my positioning so throughout. And chemo was easy compared to what I witnessed others go through. So many people much braver than me. I did routinely get hiccups on Wednesdays and the steroids were awesome for my lower back!