Hello,
I'm a recent participant in the forum, so I apologize if I'm "out of order" posting here as opposed to some other place.
I've read the survivor forum for years under various topics - e.g. mucositis. My quick background - SCC of gingiva in 2004 (non smoker, non drinker) 50's, diabetic, 2 recurrences (pre-radiation)- surgeries, radiation (entire oral cavity/both sides (part of parotids down to adam's apple) - IMRT 66 gy completed 18 months ago, dry mouth, trismus, couple biopsies (inflammation), take various meds including over the counter anti-inflammation/pain meds . My main problem is oral pain post radiation (18 months after radiation) - almost everthing I put in my mouth hurts - medication (e.g. Nystatin burns), most food burns (got to wash down with water asap), can only drink water/tea; I'm very dry always drinking water; also hurts when I brush my teeth, push it with Therabite. My docs - ENT and radiation oncologist had claimed I was a "slow healer" but now are not so sure (they've called it mucositis but I wonder if radiation just destroyed my oral tissue permanently). Also when I talk alot - my left side of mouth/tongue (where I have up/lower teeth left) really gets raw and more pain (also have a number of yellow spots that come and go - treat with Nystatin liquid - helps but doesn't solve). I see very few comments about oral pain long after oral radiation completed (even just months ago) - any thoughts on my facts/issue/treatment options (especially for the pain) would be appreciated.

jim,
i'm so sorry you've had to go through all that! i didn't go through nearly what you did, but i have experienced some mouth pain on the left side (the side that was targeted by the radiation). the salivary glands on the left side will most likely never come back so it makes that side of my mouth and the mucosa very, very dry. that dryness causes friction against my teeth which then causes the pain. i found that if i swish with water a lot and use a mild mouthwash several times a day (ACT or Biotene) then the friction isn't so bad. i am still trying to come to terms with the fact that this may be a problem i will have to deal with for the rest of my life. it is very difficult for me to accept the 'new normal'. i hope this helps and wish you the best.

Jim, I am someone who also has chronic mouth pain, inflamed tissue in my mouth and mucositis that has never really gone away. And I am further out than you from radiation--it has been almost 2 years and nine months (33 months) for me. My mouth is also very sensitive although I can eat most kinds of creamy soups, and a few other things, I can't have anything acidic at all--including many kind of juices. My tongue also gets irritated from things that feel really grainy on it that would feel completely smooth to someone normal--like split pea soup. My tongue also gets quite irritated from rubbing against teeth on one side of my mouth.

Like you, I take over the counter anti-inflammatories a lot. Like you, I have had it called mucositis by my dentist (don't see the RO anymore) but I wonder if my tissue is just like this permanently--my ENT has basically said, within the last year, that that is likely. I joked about taking a "scorched earth policy" against the cancer three years ago and find it sadly ironic that now my mouth and tongue really feel scorched each and every day.

I haven't posted about this much here because it is like other bad aftereffects I have, where I just seem to have it worse than the norm and I find it depressing and there's not much to be done about it it seems--I also have bad trismus and the radiation caused esophageal strictures and wore away a good part of my epiglottis, leaving me with bad swallowing problems even without the mouth sensitivity as well. I think the bottom line is some of us are just more sensitive to radiation than others and suffer more aftereffects. If you do find any kind of stuff to treat your mpouth that significantly changes things for you, though, I hope you bring info. about it here. I have been considering doing a daily rinse and swallow with aloe vera to see if that helps at all

I do use mouthwashes-Biotene and ACT several times a day and they help a little. Sorry I can't be of more help other than to commiserate.

Nelie

Thanks Nelie - your story is the first to come really close to my experience and it helps to know I'm not just an isolated incident. I kept hearing and reading stories that virtually everybody got back to normal usually within six months (I remember my radiation techs telling me I should be eating pizza in two weeks - yeah right). As you I don't want to give the impression that I'm not thankful just to be alive because I am (and its great to hear you are doing well further out). My RO had in the recent past mentioned possible hyperbaric treatment (with pros and cons) but as of late not mentioned. I also have found diluted rinses with Biotene mouthwash helps a little I think to help lubricate mouth (tried several other brands - burn - also use Biotene dry mouth toothpaste). I have considered a second opinion by another ENT and RO but it is difficult with insurance (especially if I then try to switch docs for treatment). I always hope things improve but just trying to get by with the situation as it is. Good luck to you.

I meant to include you in my response to Nelie - thank you for your comments and glad to hear you are doing well.

Hi Jim,

Not sure if it would be helpful or not for the thrush. I had the same problem with Nystatin burning. My 8 month old son had thrush a couple months ago, and the doctor started him with Nystatin with no success, then tried a different medication which they said was much better. The name of it is Fluconazole, and it cleared his thrush up after a little over a week, and it didn't come back. Not sure if it would be worth mentioning to your doctor, but thought I'd offer it as a suggestion.

Paul

Thanks Paul - I was on that but pharmacist said because of other meds I was on - better to use Nystatin.

Jim:

Im sorry to hear you are still having difficulties. Nystatin burns like fire in my mouth too. Im 6 months post tx and not back to normal yet either. My tongue rubs on my teeth just like Nelie explained. My taste and swallowing are at about 75%. Have you tried yoo-hoo or chocolate milk? I have found those to be very soothing to my mouth. Do you use a regular toothbrush? I still use a baby's soft toothbrush. Even biotene, oralgel, peroxyl and oasis mouth rinses burn. I water them down and rinse with water after I use them. I hope you improve with more time. Hang in there.

Wow, I am glad to hear that others have that same thing. Not glad that you all have discomfort, but glad to hear it is not just me. I have pain in my tongue still and Biotene burns my mouth. My teeth rub my cheeks and cause pain and sometimes my tongue swells and it is hard to close my mouth. With that all being said, I am still to thankful and blessed to be alive. I hope some of this stuff improves, but I guess I can live with it if I have to. Christine you and I are on about the same time schedule. I am 5 months out from treatment. Praying for healing for us all.

Cindy

Christine and Cindy.

I know 5 or 6 months out of treatment seems like a long time to still have all that going on but when you are that far, you still have a lot of healing to go so I am hopeful for both of you that things will get better. I was told by an ENT I went to for an opinion on my swallowing problems when I was about 9 months out that at that point I was probably about 70% healed and the other 30% could take at least another year. And you two aren't even at that 9 month point, so I figure maybe you have another 50% of your healing to go.

Jim, I was glad to read your post--not glad that you have all that going on--but just glad that *I* wasn't the only isolated case either (though my ENT has told me I'm not, it's not the same as reading of someone else still going through all the mpouth pain and irritation so long after treatment.

Honestly, I'm glad I didn't know that this (oer the severe swallowing disability) was even a possibility when I had treatment or I might have chickened out.

I have also wondered about hyperbaric treatment and whether it would help. I may ask about it at my next appointment.

Nelie

Great feedback from everyone - this forum really supplies a needed element for all of us. couple of comments - I use a special toothbrush I ordered - Oral B Advantage extra soft (bristles are quite soft, it still hurts getting access to back teeth); when I was about 6 mos. post rad. yes things burned more - I now use Biotene dry mouth mouthwash very diluted with water. My favorite drink is egg nog - it's soothing and smooth (and barely stings me) - suprisingly it's still available here post holidays.

For the people that are having problems with their teeth rubbing against their cheeks or tongue and causing irritation, have you ever asked your dentists or doctors about having a teeth guard made that you could wear part of the time, like when sleeping, to reduce the friction. My husband has one, not certain why, which of course he never uses. It looks very similar to my flouride trays but not anywhere near as thick. I actually made a small one out of some gunk I found in the drugstore when I had radiation to cover one tooth that was cutting a hole in my tongue.

Just a suggestion. Maybe our resident dentists can weigh in on this thought.

Take care,
Eileen

Jim04,

Have you tried Carnation IB VHC? You might need an alternative when they realize Christmas is over.

I knew David would be pushing VHC LOL I have to agree with him tho, without the VHC, I would have lost much more than 50 lbs. Good job David

Yea, I live off my VHC commission. To this day I still have not been able to get anyone from Nestle to call or e me re doing something with the OCF.

David,

Is this the drink you mentioned?
Carnation VHC (Very High Calorie) Lactose Free Drink cs/24
NESTLE

Jim,

That's it. I lived (virtually) off that stuff for over a year post Tx. I am so thankful that it is made as it really cut my feeding times down and when you don't feel like eating, that means a lot.

David,
I would be very interested to know more about your radiation treatment plan if you would (because I'm still trying to figure out why I have these mouth problems 18 mod after). For example, was your Rad. for the oral cavity, both sides, from where to where (mine both sides 66 gy bottom of my parotids to just above adam's apple) - does your mouth still burn when you eat, can you now eat normal food, trismus, really dry?

Jim,

I had BOT and 2 confirmed nodes which Moffitt decided not to remove. My rad was concentrated (machine spent the most time) on the right and left side of my neck where the nodes are present and right under my chin. I believe it was in 5 locations to begin with (all under my chin line) and later sessions it was reduced to the 3 locations I mentioned above.

I guess I am one of the more fortunate ones as I really have no eating, drinking, mouth opening or swallowing issues and my dry mouth is nothing more than a reminder. I haven't seen any improvements since my 16th month post but I don't care at this point. Heck my torn rotator cuff from being hit by a car on my bike and the resulting surgery bothers me more than the remnants of my cancer treatment.

I didn't have the benefit of this site during my Tx and believe me I was the poster child for "don't do that" so I recovered despite myself.

Thanks David - that helps (but could you explain what is "BOT"?) - I guess because the rad focus for me was oral cavity - e.g. buccal/cheeks area which included tongue that differentiates me from your treatment.

P.S. anyone reading this who had similar treatment area as me - I would be very interested in your experience/details.

Jim:

Not sure if my experiences are helpful to you. My cancer was located in 2 spots. One was the left cheek the other was left top of my mouth. My recurrance is also left cheek but down more towards the gum line. I had chemo and radiation. Surgery is scheduled for next week to remove the recurrance tumor.

BOT = Base of Tongue. That was determines to be my Primary and other than the sides of my neck where the nodes are concentrated, aiming the rad gun right under my chin to shoot the beam straight to the back of my tongue were the 3 most concentrated targeted areas.

Christine,

Good luck on your surgery. My ENT mentioned when I asked him if I had another recurrence, that he would probably use a laser type surgery. After my first/second occurence, they did multiple biopsies around in my mouth (under anesthesia) and found most has some form of atypia (but not cancer) - then later (just before my rad was to begin on one side of my mouth - supposedly with much less after effects) they found a SCC on other side. Then they switched rad treatment plan to entire oral cavity. How about your rad treatment plan - was it entire oral cavity? did you have mucositis problems/pain, still there? trismus?

Wow, you sure have had a rough time of it. My cancer was only on the left side of my mouth, so my radiation was concentrated on the left cheek and top of mouth. I had mucositis for about a month after treatment stopped. The came the dry mouth which I still have but not as bad. I do have problems with trismus. I can only open my mouth 2 fingers wide and thats with doing the daily jaw exercises. My saliva and taste are back at about 75% due to the right side not getting the radiation. My doc said the right would be spared. I cant complain too much about pain, its uncomfortable sometimes, but that could be due to my recurrance.