...there is a rose. In fact there now seems to be a rose to offset every thorn.

Five and a half months out from chemo and rads and the mouth pain continues but now seems to have turned a corner and seems to be abating! Rarely is the pain severe these days and I recently started triamcinolone acetonide dental paste to heal the ulcerations on my tongue. My swallowing problems also continue but, in the absence of pain, I have days where I can eat to my heart's content! There is still all the choking, hawking, coughing, etc, so I'm not ready to eat in public but, absent the pain, I believe that day is coming! So far, I have lost 90 pounds from what I call The Anorexia Of The CRT (Chemo/radiation therapy) - not altogether a bad thing for somebody who was at least 70 pounds overweight - and I no longer seem to be diabetic!!! It was a very tough way to lose it and I had problems with both dehydration and malnutrition but it is gone now and I'm keeping it off. Big Liam might not cast half as broad a shadow as he did before but he casts a shadow nonetheless! My weight is stabilizing; my diet is healthier; and, best of all, I seem to have gotten the upper hand on the cancer and there is no sign of it remaining. Roses indeed!

I encourage anyone having a long hard road not to lose hope. A day may be coming when you, too, suddenly realize, "I feel a bit better today." And that, my friends, is a grand day indeed!

We're on the one road sharing the one load.
We're on the road to who knows where.
We're on the one road,
Maybe the wrong road,
But we're together now, who cares?
North Men, South Men comrades all
Dublin, Belfast, Cork and Donegal
We're on the one road swingin' along,
Singin' a Soldier's Song

Liam Skye

Congrats on there is no sign of the cancer remaining. I'm traveling this road with my mother, I hope to be saying the same thing soon.

I'm glad your feeling better and your diabetes is gone also.
Good luck
Heidi

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=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!

With the one ulceration - if it's in a location that is reachable try and ask for an oracorte prescription. Eat, clean your mouth and the area and dab some on. It will help it heal faster.

hugs.

[quote=Cheryld]With the one ulceration - if it's in a location that is reachable try and ask for an oracorte prescription. Eat, clean your mouth and the area and dab some on. It will help it heal faster.

hugs. [/quote]

Oracort = triamcinolone acetonide. That's the stuff that cleared up that one horrible ulcer that was the bane of my conscious existence for so long. The one I have now is way back down the back of my tongue and I'm not sure I can get to it. I need to get hold of some of the long applicators (like a single-ended Q-tip about 6 or 8 inches long) to see if I can get to it. If I target it and get it a couple of times I'm pretty confident I can keep hitting my mark. Seeing my ENT in 3 days - we'll see if we can make this work! Thanks, Cheryl.

awesome... best of luck.

Thanks, Liam! Right now I'm ulcer free and I'm almost 5 months out. I've figured out that the 3 times the ulcers have returned have all been when I'm sick w a cold. Always on the palate. They go away within a week but hurt like the devil in the meantime. As u know. So odd. But I can't complain, bc they do go away. What I hate most tho is that my cancer started as a canker sore type lesion on my tongue. So every ulcer in my mind is potential cancer! Ug. But now I know they are normal, and as long as they go away I'm ok. Thx so much for the input and I hope you also get relief soon!

Keep on trucking... three years out I still notice small improvements. Now in particular with the clarity of my taste. hugs