Severe pain eating 7 weeks post-RT

@ranchroad
Hi,
Cheezeyburgies are not in my vision. I get most of my nutrition in my feeding tube. Easy-peasy. The new normal is finding foods that work for you. It's really taking it in with trial n error. I'm almost 3 yrs out from SCC Tongue and one neck lympher. Radiation side-effects are long-lasting. There's hope and light in this journey. Lean on us. We all get it. Wishing you well.

@zenren14 Thank you for sharing that — it really helps to hear from someone further down the road. The “new normal” idea resonates a lot; I’m still in the thick of the trial-and-error stage and it’s been frustrating. Knowing that things can settle and that others have found what works for them gives me some hope. I appreciate the reminder to lean on this community — it means a lot right now. Wishing you continued healing and comfort, too.

One possible explanation for these painful ‘blisters’. I’m not a medical professional, nor has any doctor weighed in here, nor did I stay at a Holiday Inn Express last night — just sharing what I’ve learned from the research I've done on this topic.

One possible explanation is that the tiny salivary ducts (minor salivary glands) in those areas got zapped by radiation and are still inflamed or scarred. When saliva tries to come through and the duct is narrowed or blocked, it backs up under the surface and makes a bubble—a superficial mucocele.

They usually swell, sting, and then pop or flatten within hours or a day. Things like salty or acidic food, hyper-osmolar liquids, dehydration, or talking a lot can trigger them. It doesn't seem that they are super common, on the order of < 5% or maybe less. I've combed through various message boards to get some clues (there are no real academic papers on this), and it seems it's VERY typical for these to last 4-5 months post-RT.

Just wanted to share for those who might be wondering (@metsgirl) what these are and why they happen. I'll post what my Dr. says next week on this topic as well

@ranchroad Very interesting research! Thanks for posting. I nay run this by my doctors as well. Though I am trying not to bug them so much. My doctors did not indicate that this was typical, but rather as head and neck specialists they had encountered it in other patients and that certain foods seemed to trigger it. I, like you, have adopted the approach of avoiding triggers. But if it is going to last that long, I may need to reconsider since I was just able to start tasting some things and I hate the idea of continuing the Boost only diet I have been on. Some of my triggers have been salty or acidic, but some have also had sugar or it was a texture irritant. Thanks again!

I hear you. Really. The thought of this going on for another 2-3 month is almost unbearable. Right now I have not identified any solution other than avoiding triggers and waiting. Ughhh....

One person on here mentioned Mauuka honey,they got it Amazon, it helped them. Maybe give it a try?

Hi Tom, I know how you feel. I had/have the same thing. Are you gargling with salt, baking soda, and L- Glutamine powder? And Club Soda. Lidocaine helped too, but you need a prescription. Pop cycles if you can tolerate them. Not necessarily all together. Green tea in the morning helps a lot. Scrambled eggs and chicken noodle soup. I can do coffee now but could not 5 weeks ago. Chinese egg flour soup is great if you have a near by Chinese restaurant.

@harleytiger - Ouch, yeah I feel for you. Yes I do the salt & baking soda rinses. And Healios (contains L-Glutamine and a few other things). Haven't tried club soda, but did try drinking sparkling water a few weeks ago and it wasn't a pleasant experience (used to guzzle it). Chicken noodle soup has been great. For some reason I can consume gallons of it and am fine. It really is a cure-all I suppose.

Are yours still acting up? How far out from RT are you?

I had tongue and lymph node cancer. SSC HPV with neck disection and reconstruction. 38 radiation and 7 cisplatin chemo. I know most patients don't want the PEG tube but I loved mine. I kept my nutrition up at optimum level. My mouth, tongue and throat had a break . I got the tube after my surgery and just as I started chemo and radiation. I could eat and drink whatever I wanted. I drank a lot of water. I never had to use either of the magic mouthwashes. Just the baking soda rinse often. If you are having pain and unable to keep up with your nutrition I recommend a tube.

@ranchroad I'm almost 2 months out. I have good days and not so good days. I'm dealing with a stiffness in my neck? I don't know if it's from the surgery or radiation? I keep trying to work it out. I've stopped using my massager for a while. I've noticed that my tastes have fallen off since I started it. I'm just going to go back to stretching. I'm eating everything now, just with a lot of Almond milk or water. Tonight I had a bbq cheeseburger, beans, and potato salad. I just go for it. I want to get back to normal as soon as possible. I'm not a patient man. Some here were put on feeding tubes and that wasn't my case. My oncologist doesn't use them on HPV tonsil. I'm glad he didn't because I'm back to eating everything not even two months out. Actually, I was eating normally at one month out I'm sorry this happened to us, but I always tell myself it could be worse. I'm hoping my Salivary glands start kicking in soon. Dry mouth is no fun and plus I use CPAP. I just keep water and Xylitol Max Spray by my bed. Plus, I go to bed with two Xylitol tablets in my cheeks (one on each side). My jaw is stiff and I'm constantly opening it as wide as I can and close and then repeat. Get your dentist to make you dental trays and get going on Fluoride. You don't want to lose your teeth. I've lost about 20 pounds? That's ok, I needed to lose some weight anyway. LOL Just hang in there and try to get back to normal ASAP. Get off the pain meds as soon as possible.