Severe pain eating 7 weeks post-RT

Have they given you any pain meds or lidocaine mouthwash? There has to be something they can give you to ease all this!

@lizzyj58 I do indeed have some tools to help with the pain - lidocaine, hydrocodone, gabapentin. But I’m wondering more about the physiologic response - seems really unfortunate, and I wonder if uncommon, that so many foods set this off

@ranchroad I was stage 2 HPV 16 positive tonsil cancer. I had 35 radiation treatments, 70 gy, and 6 cisplatin infusions. I am 8 weeks out. I am experiencing nearly the exact same blisters in reaction to eating. I have subsisted on almost exclusively VHC Boost for the last 12 weeks. It does not cause the reaction. But almost anything else does. Clear blisters back near where the lump on my right tonsil originally was. They subside if I dont eat and come back with anything other than boost or egg drop soup.

I have asked my doctors and they are not concerned either. They say it's part of the healing process and should become less frequent. The location is where the most radiation was delivered.

I am just beginning to get some taste back, but I can't eat. It's really frustrating. My pain level is not as bad as you describe. I only used gabapentin throughout my treatment and was weaned off that three weeks ago.

I really empathize with you!

@ranchroad Just adding that my radiation was also proton.

@metsgirl Interesting that you can tolerate Boost VHC - that was one of the main things that set it off for me. And also helpful to hear your doctor’s perspective on this. I haven’t been able to get a direct response from my doctor yet, as my 8-week appointment is next week Monday and I’ll ask then. Will update if I hear any other perspective!

@ranchroad There was a time, around 1 to 2 weeks out where the VHC Boost burned the soft palate. But that subsided at a week or so. Yes. I'll be interested to hear if your doctor has another observation or comment.

@ranchroad Subsided after a week or so.

Hey Tom,
I'm sorry to hear about your pain. I had stage 3 tonsil cancer, got three doses of chemo and 35 radiation treatments at 70gy and it became pretty bad in the middle of treatment. I had a feeding tube placed because it was to excruciating to even drink a nutritional shake. You are already 7 weeks post though, so feeding tube is probably not advised. As others have recommended, lidocaine is available, but for me the texture and taste made me nauseous. Maybe it won't affect you like that. You can also look into warm water with baking soda or salt or off the shelf mouthwashes like Oral-B mouth sore oral rinse. What did help me to some extent was getting a prescription for morphine sulfate oral solution. I know it's hard but hang in there. In time it will get better.

@ranchroad From what other people on here have said it sounds like a common complaint, I'm surprised your care team have not been more supportive. My husband is starting his treatment later this month,just the same as what you went through. One person said that by 3 months out from treatments symptoms got a little easier, I sincerely hope hope you start to improve soon,keep all of us here updated,please. It helps to share with others who have gone through all this. Take it one week at a time.

Thanks all - Thank god I am still able to eat things like eggs, yogurt, cheese, and soups. I’m drinking cartons of half & half to keep the calories up.

I’m not a huge fan of any of the pain medication tbh, so I’m working more toward steering away from triggers for now vs. medicating myself for pain. My plan is zero experiments for 2-3 weeks to stabilize things, then maybe try something new.

My care team really underplayed the post-treatment side effects, for some reason I envisioned myself tucking into cheeseburgers by now…definitely not!!