← Return to Severe pain eating 7 weeks post-RT

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Severe pain eating 7 weeks post-RT

Head & Neck Cancer | Last Active: 2 minutes ago | Replies (41)

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Profile picture for harleytiger @harleytiger

@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.

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Replies to "@ranchroad I'm almost 2 months out. I have good days and not so good days. I'm..."

@harleytiger Eating burgers…amazing. I’d do it if I didn’t think it’d put me on the pain train. I wouldn’t ever consider a feeding tube at this point since I’m now creatively finding ways to get calories until these damn “water blisters” go away and I can at least half eat like a human again.

Check out pilocarpine fo saliva, it’s a short acting salivary stimulant and might help at meal times, although maybe not so much overnight. If you ask for your DVH (dose volume histogram) you can check the dosage your different salivary glands received, which will provide clues as to how much you might get back. From the research I’ve done after 39gy of dosage to your parotid or sub-mandibular glands, they’re basically done for good. I also had tonsil and my submandibular was in the 50’s, so not expecting too much recovery from that one

You may want to talk to a cardiologist as I found out that besides recurrence, the biggest mortality risk factor is stroke due to the dose your carotid receives. Happy to provide more info on that if helpful