[quote=Lbstover]Congrats! I finished treatment in June and I had horrible radiation mucositis. It healed in about 4-6 weeks, but I still get occasional random painful ulcers that occur in spots where I had mucositis. Has this been your experience that they come and go still? So odd! Radiation really is the gift that keeps on giving! [/quote]

Yes, that is similar to my experience with the aphthous ulcers of the mouth and tongue following mucositis. The ulcers would come and go so the pain moved around, with the exception of one ulcer on the side of my tongue that was about 25 mm long by 15 mm wide. It was remarkable for its size, its persistence (almost 7 months), and the amount of excruciating pain it caused. Over time it started to get smaller and then finally healed over with the help of some triamcinolone acetonide dental paste. I don't want to discourage you by acknowledging they can take a long time to heal - but they DO heal. Nobody on my medical team seemed to want to speculate on just how long it was going to take and I actually felt better when a friend who is a nurse let the cat out of the bag: "They take FOREVER to heal." I actually felt better knowing this because I thought I was showing symptoms that indicated something more sinister going on. I can take the suffering, and I have found out I can take it for a long time, but I have to know if it is reasonable to expect that it will end. Knowing there was a light at the end of the tunnel was the most important thing for me - regardless that the tunnel itself might be long, dark, and deep.

I am now 6 months out from the end of both radiation and chemo. I have one ulcer way down the back of my tongue that can be very painful if the wrong substance gets on it, but I am careful. Last weekend my wife and I went out to eat at a restaurant, for the first time since I was diagnosed in January. I ordered soft food - soup, crab cake, and mac and cheese - and I did just fine. I was very careful and there was no coughing, choking, and hacking to get the food down, just taking small bites, chewing thoroughly, moistening the food and swallowing it all the way down. It was a real milestone - and you will have yours as well.

Now that I am no longer plagued with excruciating tongue pain I find my swallowing reflex to be slowly but steadily returning towards normalcy. I don't feel like there is a shelf halfway down where the food goes to sit before being finally completely swallowed. When I swallow, the food goes directly down.

It all gets better with time, LBstover. Don't lose hope and don't lose sight of the light at the end of the deep dark tunnel. It's there and you will reach it, even though some of us are treated to more lingering late radiation effects than others. The gift that keeps on giving indeed!