I finished radiation July 10th of 2003 and at Thanksgiving, 4 1/2 months later, I was able to get down a bit of mashed potatoe and gravy and a small piece of turkey. At your stage of the game, I was still using my tube for total nutrition and I still had tons of sores in my mouth, especially on my tongue. I STILL have two sore spots on my tongue that I think will remain sore the rest of my life. My teeth give me enormous problems with rubbing on my tongue and creating sore spots.
Always tell your doctor anything that changes, but reading your post it sounds like you are doing great and pretty much on track.
Minnie

Minnie, I'm really sleepy writing this so hopefully I can make it not too rambling but I'm just wondering since you still have these sore spots, how does that affect your eating and speaking? This is of real drastic importance to me wince I'm going back to work teaching and training part time in a couple of weeks and, although I've arranged for one class to be online, I still can't imagine getting through an hour and 15 minute class, even with lots of student interaction in there, without being in agony by the end.

Today a friend came to visit and we talked for about half an hour (and she was speaking as much as or more than I was) before my tongue, where it rubs against this one tooth, was so sore that the pain was very intense. Later my brother called and I had to ask him to email me instead, even though I really wanted to speak to him, because I was just in too much pain on that spot to speak easily.

I assume eventually I can get that tooth worked on somehow to be less jagged right there but I don't know what to do in the meantime. How do you currently deal with mouth pain? Do you still have to take prescription painkillers for it?

The other spot that causes me lots of pain, especially at night, is the roof of my mouth where it is kind of domed right behind my front teeth. The tissue there seems to have a lot of ridges on it, and has NO moisture to it at times and the part of my tongue that rests against that seems to also get painful and irritated by the contact--kind of like it is resting against velcro or soemthing. Has anyone else experienced this?

Anyway, I'd appreciate any and all coping advice...

Nelie

Nelie,

I had something similar happen a couple of months after I finished my treatment. I was scheduled to teach part of a training session (I think it was a 1-hour segment) on a topic that I had taught numerous times before, so I was thinking it would be just like all the other times. For some foolish reason, I didn't even have a water bottle with me! After about 20 minutes, my mouth was toast, and I had to run out and grab some water and try to regroup to deal with the extreme dryness and irritation. Even though it helped a bit to get some hydration at that point, I ultimately had to shorten my part of the session because I couldn't make it the full hour.

It's good that you will have some student interaction in your class -- I'd suggest that you try whatever you need to do to maximize that part of it while you're getting back your strength. Also, is there anyone who could be some sort of teaching assistant with you for some time to help with the lecture portion?

Cathy

Nelie,

This is Barb, the dental hygienist, oral cancer survivor (from Clarks Summit). The roof of your mouth is probably getting so sore at night because you are breathing through your mouth. You could try putting a coating of Vaseline on that tissue, which would also maybe make the tip of your tongue feel better too. My tongue also gets sore on the side where I had my glossectomy, but I wear a night guard when I sleep, which keeps my upper and lower teeth separated and so my tongue kind of goes in between them instead of rubbing against them and it has helped a lot. I speak all day long for my job too and there were days in the beginning when my tongue was very sore, but now it usually feels okay. It takes a while, but you will feel better. I was impatient and I didn't belive I would ever feel better again, but I do. I didn't have radiation and it still took a long time for my tongue to settle down.

Barb

Hi Nelie,
At first I was in alot of pain from these sores. I couldn't talk for more then 30 minutes or so then it became to painful. I went and had one of the teeth filed a bit and that helped, but I'm thinking of having the tooth removed to take the problem away. Eventually, your tongue will kind of toughen up where it's being rubbed, almost like a callous. Don't let the area spook you if it changes color and texture. Show it to your doctor of course but the area will change in looks and feel. My tongue is still sore if I talk alot so I try to pace myself. I am also guilty of eating candy alot which may contribute to my mouth being sore, not sure on that one.
I found rinsing my mouth with salt water a few times a day worked wonders and also Biotene mouthwash is awesome. I keep some in my purse and use it nonstop, not so much for dry mouth as it relieves the soreness in my mouth.
Hope this helps,
Minnie

You may wish to see about getting an acrylic overlay for the rough tooth -- I had this done recently for a molar that had an old filling and a sharp edge which rubbed the side of my tongue, making it sore, when I spoke (and I wasn't even recovering from radiation!). The dentist removed the old filling and made a lovely impossible-to-tell-from-rest-of-tooth overlay (not a crown, no metal) that restored the external appearance of the tooth (and its smooth contours). It is glued on and so far (months and months) has not budged.

Gail

Nelie,

There shouldn't be any reason why a dentist can't do minimal treatment for you, such as just smoothing off the rough edge of the broken tooth.
Have you checked this out? You could go back for a more permanent solution when it is the appropriate time. You shouldn't suffer like this.

I would suggest you get this taken care of ASAP. Constantly irritating the tongue in that area can be harmful.

Jerry

Thank you all for the advice and support. I am really feeling not very ready to go back to work. Partly because of the mouthpain, partly because I'm still taking painkillers and on the tube for all my nutrition! Thank goodness it's going to be a little less than full time because of the 2 banked overload classes I had that i redeemed for a lower teaching load. Anyway, I don't have to actually be in the classroom for almost two weeks but I have to be there and participate in a bunch of meetings starting tommorrow so we'll see how it goes.

Minnie, I used the Biotene before I had radiation and found it very helpful when my mouth would get sore then but actually i find Biotene mouthwash stings my mouth (as does almost everything except water with baking soda and salt and sweetened tea) these days (I still try to use it a couple of times a day though, unless the mouth pain is really bad).

Barb, I put the biotene oral balance gel on the roof of my mouth at night before I go to sleep and it does help a little with the pain at night. I probably need to do that more during the day too. Are those kind of hard little ridges and valleys in the tissue there normal? I'm not sure I'd know if my mouth was like that before all this, though I know I can feel them with the tip of my tongue in a more distinct way now so I think they must have gotten more ridge-y.

As for the suggestions about going to the dentist, I had been thinking I should wait until my mouth was less sore before seeing the dentist but I think I need to see him soon anyway (it's been two months since the end of rad) because I need to get a high-fluoride toothpaste until it hurts less to use those trays. I tried to call him Thursday but got his office too late and then the office is closed Friday. But I'm going to be on the phone first thing Monday peading for him to get me in ASAP.

The thing is the part of my teeth that rubs against teh sore spot on the tongue isn't so jagged that by itself it would cause major irritation I don't think. But my tongue was swollen and sensitive from rad and so it rubbed more. It's also right next to one of the teeth I have missing and once I get a bridge put in there it may be a moot point since I think my tongue kind of gets pushed out more because of that gap then gets irritated by the tooth next to it. Finally, this is aggravted even more by another problem I'm still having which is I sometimes (on average every other day I'd say) get the dry heaves in the morning. I'm almost positive this is ebcause of some nasty-tasting phlegm that accumulates in my throatn at night gets very dried out and sticky and then, because it is near that part of the throat that triggers my (sensitive) gag reflex, I get these very strong heaves shortly after I wake up in the AM .

The heaves usually don't last long but they are strong and push my tongue against my teeth, which I know aggravates the soreness there. I am trying to learn how to control this heaving reaction, including drinking some fliuds overnight in hopes that will help, but I'm not having much success so far! Has anyone else had this kind of problem?

How long can I stay on the tube, without eating anything and drinking almost nothing, without causing permanent damage to my chances of ever getting back to normal? I am getting worried about that too. I saw my rad oncologist (the one from Roswell Park) Wednesday and he did an exam that was thorough enough to reassure me that none of this is probably a sign of recurrence (and of course my ENT said teh same thing abotu three-four weeks ago) and did say that it's not too unusual to still be having mouth problems two months after rad but I know he ahd hoped I'd find I could eat something by now.

Nelie,

As far as timeline, I am just a bit behind Minnie, although I did not have a glossectomy. My throat hurts every morning for a while when I first wake. I go through bouts of my mouth hurting and if I drink a soda, my entire mouth and throat hurts the next day until I swish for a couple of days with Nystatin. I battled thrush for many months and it caused sores in my mouth and throat that were really painful, even swallowing water, which took me almost 6 months to tolerate, by the way. I choked when I tried to swallow water so I just drank a lot of milk.

Sometime around February, about 4 months post treatment, everything changed and I even fight the teenagers for the chips and salsa now . I grew some jalapenos last summer and either the massive rain we got or something made them so hot that when I tried one, I had to reach for the magic mouthwash for about an hour to ease the pain. I still have 3 jars left a year later !

I eat everything now and especially love tabasco on my fried chicken again. I never get more than an arm's distance from my water bottle and try to go for periods without it but can still only go about 5 minutes without a swig or my throat gets a little painful.

It sounds like you are on track for where you are. It took me about 10-12 weeks for the brown stringy goo to mellow out. I used to tell people to imagine Crystal Gayle singing..."Don't it make your brown goo clear..." When it turned clear, it was soon gone. The vomitting stopped shortly after that. I also thought Boston Market would be pretty neutral but I puked up the squash even, after it bitterly burned my throat while I ate it. Even mashed potatoes burned for months.

Hang in there.

Ed

Thnaks all,

I have a question about thrush and treatment for thrush. First of all, I am having some VERY bad mouth pain at night. Mainly in those same two spots: the right side of my tongue, which may be aggravated by rubbing against a rough tooth edge there, and the front roof of my mouth which feels completely dried out at night and filled with bumps and ridges. The pain is so bad that even taking 15 mg of oxydose (which I only do for breakthrough pain, otherwise it's 5 or 10), I was woken up by it several times. I am thunking this pain must partly be from thrush, unless my docs are wrong and its a recurrence of cancer--which I certainly hope is not the case and is statistically unlikely.

All I have ever been given to treat thrush is a magic mouthwash with nystatin in it. I guess that's not quite true--I did get diflucan when I was in the hospital wuth an infection right after rad was over, but just to take during the time I was being treated with antibiotics. So that ended once I was out of the hospital.

I'm supposed to do the magic mouthwash 4 times a day and I have a terrible time rememebring to do it--mainly because I hate the taste of it and it is also often very painful when I swish it around. Is there some reason why I shouldn't get a prescription for diflucan or some other anti-thrush pill (or, in my case, I guess I'd need a liquid for the tube) and see if that doesn't clear up[ a lot of this pain? If it is just pain from thursh that is never really fully cured that is making it impossible to eat, I'd like to know that and I am learning from experience that the magic mouthwash just isn't going to do it for me!

But the docs seem very reluctant to prescribe this. Is that because of bad side effects? Could my dentist prescribe it (maybe I'll ask him)?