I'm a one year tongue cancer survivor. Squamos cell carcinoma at the base of my tongue on the left side. I was diagnosed as stage IV. Had the whole experience, surgery, chemo,and radiatation. Lost a good bit of my taste,lost teeth during the surgery. I have difficult speech now, and I'm still eating soft food (Yuck). But really, I'm just happy to be alive. Happy to say that my most recent PET scan came back clean.

Hey, J., Hope you will keep posting! Your recovery sounds alot like my husband's, so it's good to know you are out there. Amy

Jam,

I'm glad I found this site. One of the things that amazed me and my family is how people like me "fly under the radar". In that I mean I never imagined in my wildest dreams how many people are effected by cancer. I've had the privilige of meeting some of nicest people that I've ever met in my life through the course of my treatments.

John

John

John, have they told you when you might be able to get new teeth? My John wants that so much? Amy

John - I can echo your sentiment about meeting wonderful people - my experience is like yours. Perhaps it is the reality of cancer that sweeps away pretentiousness, and gets us down to the real us. Whatever it is, it sure feels good.

The food thing is a long term concern for me. All my teeth were pulled before rad. The ray gun pretty much killed my swallow, so I am still living by my peg tube - over two years out of tx. Getting dentures to fit well has been a challenge. The radiation is so hard on the jaw tissues that we cannot risk even minor abrasions in there - little injuries can become huge ones in a hurry.

The overall healing is slow, but it does continue and its a thrill to get the tiniest pieces of function back. Food may never be as it was before, but it is exciting to find new things to swallow! Keep those clean PET scans coming. They beat pizza any time. Tom

Hi j. Congratulations on your successful recovery. I too lost my teeth on the bottom, due to Jaw replacement on both sides. My speach was also effected. It will improve with time and pratice. I have found that when a word or sound gives me trouble in my prnounceation, I write it down and when I have time I pratice getting it right. The old saying pratice makes perfect applies. As far as eating soft foods aren't so bad. Just vary it as much as possible so it doesn't get boring. Yes, healing is a problem, but the Drs. the the Mayo Clinic in Scottsdale assure me that it can be done. Implants are a must and the procedure takes months, but I understand from other members that it is well worth the time. Best of luck and keep your positive attitude. Happy Holidays.

Hacklene

I met with an oral surgeon yesterday. I will go into the operating room after the first of the year to have some dental work done and a bridge made. My real issue is that I just can't open my mouth. I had a lot more range of motion prior to my radiation. My ENT doctor and the radiation oncologist both tell me that the radiation just did to much damage to the left side of my jaw. I have very limited range of motion. I guess and I hate to say this, but I should fell lucky to not have a feeding tube. I just have to eat "soft" food. I've become quite the Chef. I experiment with a lot of different foods. I beleive that my taste has come back as far as it's going to, which leaves a lot to be desired. I really don't mind. As far as nutrition goes, I'm healthier now than I've ever been in my life. There is a silver lining to all things. Good to meet with all of you. I wish you all the best.

John

John - have you read the pages on the site about trismus? There are exercises that you can do and a device (also a tongue blade alternative) that can help you streach the muscles out over a period of time. I was told to do these from the begining day of treament till 6 months afterwards every day, and my results are pretty good.....people even tell me I have a big mouth (guess that dosen't exactly man the same thing!)

Brian,

I have a thera-bite. Doesn't do much good. I've done exercises that my speech therapist gave me. Nothing seemed to help. I've even pried my mouth open with tongue depressors. I'll look up the information that you suggested on trismus. I had greater range of motion prior to radiation. Thanks for the advice. I appreciate any insight that I receive.

John

Well you have the device i was refering to. The trick that doctors tell patients is to do it right from day one of treatment. Too many of them only mention it in passing and do not weekly check your range of motion to confirm you are not slacking off during treatment. Scar tissue forms in the muscles during the radiation process, between the long fibres of the muscle. The trick is to catch this early so that it never has a chance to become so thick that it dominates the movement of the muscle. Doing this after treatment dosen't usually have great results, but will only help a little. By then you are asking too much of the muscles to overcome this non elastic material within them. Sorry, thought I had an easy fix to your problem.

Brian,

I've had the thera-bite since the beginning. I've had great difficulty opening my mouth even to use the contraption. My ENT suggested it straight off. I've pretty much resigned myself to the fact that this is how I'm going to be. I've had an operation done to remove scar tissue, but I did not see any improvement. My ENT was pretty dissapointed. He thought I would be helped by the procedure. I think it bothers other people more than it bothers me. I've had people ask me "Doesn't it bother you that you can't eat regular food?" I always answer with a resounding no. There is a lot more to life than food. I look at it this way. There are people starving in third world countries who would love to be able to eat what I do everyday. I feel fortunate that I'm able to maintain my weight and that I'm healthy.

One of my greatest concerns was my ability to communicate with the people that I manage at work. I've had to make a conscientious effort to slow down when I speak and try to annunciate more clearly. I have trouble with certain sounds. But I've been back to work since the first of February and I haven't missed a beat.

John

John - I too got little benefit from the Thera-bite. Months of PT and painful exercises did almost nothing to increase the movement of my jaw. Like you, I had resigned myself to a tiny opening. My ent described the muscles like rubber bands before rad, and like shoe leather after rad. Poor me, stuck with a tiny mouth. Not even a large enough opening to insert a denture. Then I went back to teaching, talking alot, having to project my voice to the back of the classroom. Lo and behold, my jaw began to loosen.

My last radiation was in 9 of 03 and I am STILL recovering jaw movement! Its exciting and very encouraging. Don't believe for a moment that you are stuck forever with that limited motion. When the muscles are completely healed, they will begin to stretch a bit. With your encouragement and effort, you may still get more motion back. I'll never be Grand Canyon mouth again, but I am better than I was a year ago!!

Keep the Thera-bite. Its a great conversation starter..... Tom

J,Cherup.... whatever your final outcome, including the improvemnts that may occur as time passes, you have a first class winner's attitude. The willingness to adapt, the positive attitude regardless of where you are in the process, are marks of a winner in my book.

Tom,

There is always hope. I'm just a realist. If this is as good as it gets, I accept that. Anything over and above what I have now is a bonus. Believe me, for what I've gone throguh, LIFE IS GOOD. I finished radiation back in the first week of January. Some days are better than others. When I first get up in the morning, I can open wide enough to at least brush my teeth. As the day progresses, I lose a lot of opening. By evening it's almost gone. I've tried using the thera-bite and tongue depressors to pry my mouth open. The pain is excrutiating. I've had enough pain for two lifetimes.

I kept my mask from my radiation. I have it mounted on a wall in my office. It, like the thera-bite is a great conversation starter. I consider it a badge of honor.

John

Have to weigh in here and say that I am really enjoying some of the recent "joiners" to our club that nobody wants to join. Some excellent perspective, some good thoughts, some tasty humor.

Anita

Although it's discouraging news about the therabite. I did jaw stretches with no therabite (JUST opening as wide as a could and holding it for several seconds and repeating several times a day) during rad and I think my mouth stayed pretty limber then but during July and August, 2-3 months after rad, I started to gradually lose felxibility without realizing it. I didn't even GET a therabite until October. I find my mouth opening is narrowest in the AM but with the therabite I can widen it a bit duing the day and in the evening it's wide enough for me to be able to floss everywhere, even my back teeth (its a little wider than two finger-widths--I know it's supposed to be three.

Tom, I am hoping you are right about the classroom thing since I return to the classroom, for two classes anyway, next semester (I've been teaching part time online all through treatment and will continue with that too to try to avoid overdoing it and straining my voice at first). I'm also hoping if I keep regularly using the therabite it will get my mouth open a little wider since I need it to be a LITTLE wider to get some dental work done.

Nelie

Nelie,

I'm just the opposite as far as opening. I have more range in the morning. As wide as I can get is barely enough to force and I mean force a toothrush into my mouth. As the day progresses, my mouth opening regresses. Thank God for a food processor. I have to puree everything. I also have to have some dentql work done. Mine will be done in the O.R. They will pry my mouth open. I lost a few teeth during the initial surgery and I have others that moved during the course of radiation treatments.

John

Friends,
I recently bought a therabite after being 3 years removed from treatment. I only learned about it on this site...no one at MDACC ever mentioned or suggested it. I put it by the breakfast table in its little blue bag so it will be convenient and I will use it. However, since I don't like it, it's easy to forget and I don't use it all that much.
I am glad to learn that it does not work that well anyway!

Danny G.

Hi --

Barry was prescribed a Thera-bite by his ENT (the one who herself had HNC and has some trismus from her radiation treatment) -- she told him she had been negligent about doing the stretching exercises prescribed to her at the time and didn't want the same thing to happen to him. She really rattled his cage about getting on this up front.

So he did and started to use the Thera-bite from the beginning and still does, 8 weeks' out from treatment -- his ENT and dentist both say he will need to continue for at least another year to be sure that late scarring and fibrosis don't "creep in."

So whether it was due entirely to the Thera-bite or not, his mouth opening is the same as before treatment. At one point mid-radiation he was having a problem getting his mouth all the way open but he thinks this was inflammation and soreness as now he can open the device all the way again. He says it is a bit stiff the first stretch so he thinks that trismus could sneak up on him if he let things slide. He religiously does 7 stretches, 7 times a day for 7 seconds as the Thera-bite liturature recommends. I read the brochure as well and recall that they said something like "three sessions a day" was insufficient to achieve desired results.

So it can work, at least for some patients. The published studies say that many but unfortunately not all who use it get some improvement.

Gail

Hi,

Your positive attitude and great sense of humor are an inspiration.

As a dentist, I have several questions for you.
1. What procedure is the oral surgeon going to perform in the OR?

2. Will the bridge work be done while you are asleep and who will be doing the work? Another dentist or does the surgeon also do bridges?

Just curious.

Jerry

Jerry,

I have a father & son team. The father is the oral surgeon and the son is the dentist. I will be put under for the procedure. I have to have a few teeth removed that I had root canals on years ago. I also have a tooth that I broke just prior to my radiation. I have a temporary filling in it. The dentist thinks I'll have to have it pulled as well. I had a pandoramic? x-ray done on my jaw. I have to meet with them again next week to finalize the plans.

John

John, Just curious also since I also have teeth that have moved around some since pre-radiation, have you had hyperbaric oxygen therapy before this? If not, what about the risk of ORN?

Nelie

John and Nelie - I too am interested in the possibilities. ORN is a real danger for all of us with night-glow jaws. Does anyone have history with reconstructive jaw work AFTER rad? Anybody have any experience with ORN? Has anyone been able to get a refund for the stupid mask?? Tom

Please excuse my ignorance, but what is ORN / hyperbaric oxygen therapy? It's all Greek to me!

John

Got a good one for you guys. While I was in the hospital last year recuperating from my surgery. I somehow managed to have kidney stones. Made me forget about the pain I had from the surgery in a heart beat. Never before in my life had I experienced THAT kind of pain. It was excrutiating. Talk about adding insult to injury. I couldn't talk because I still had my trach in, but I let the nurses know in no uncertain terms that I needed something done and done in a hurry.

John

John - ORN is (I think) Osteo-Radio-Necrosis. Its a dangerous degenerative condition that can occur in radiated tissue. I don't know the mechanism, but small sores or injuries do not heal, rather they grow very large and become threatening to surrounding tissues.

ORN in the jaw can cause the complete loss of the entire jaw. The radiation so damages the blood vessels that they cannot supply injured sights with healing fluids - precipitating the catastrophic loss of tissue. Its really ugly stuff. It is the fear of ORN that keeps most of us from risking any surgeries in the radiation field. It can be risky.

Hyperbaric Oxygen treatment is a mechanical method to attempt to oxygenate damaged tissue. It is, I believe, the treatment of choice to try and stop ORN from advancing.

Please seek better definitions of both of these terms. My knowledge is limited, and you need solid information about both of them. Your doc can help you. Hope this helps a little. Tom

John, For what it's worth, my oral surgeon, who has a lot of experience treating patients who have had oral radiaton, says some of his patients who have had oral radiation choose to have oral surgery such as tooth extractions without Hyperbaric oxygen therapy (HBO) and take their chances with ORN, especially if he believes their risk is low because of their radiation plan (apparently with IMRT radiation, less of the jaw is likely to be severly damaged by radiation than with general field radiation). I think this is in part because anyone living here would have to drive oevr an hour each way to GET HBO and you have to go every day for several weeks of treatment. He says often they don't have a problem, but once in a while they do.

Apparently the standard the recommendation is that you have a certain number of HBO therapy sessions before any surgery that affects the jaw (O'm thinking he said 30 but I'm not at all sure I'm recalling that right) and then a few more after in order to be sure the jaw is going to heal OK.

It also apparently helps heal soft tissue that may be permanently injured from radiation. There are other folks here who can say more about that.

Nelie

Hi,
I'm not a dentist or medical at all but since no one else has responded to your questions about HBO and ORN I wil try.

HBO is hyperbaric oyxgen treatments. I was told prior to my radiation that these HBO treatments, about 30 of them, would be an absolute necessity before I had any dental surgery after having radiation. This is the only reason that I allowed them to pull some teeth before radiation.

ORN is osteoradionecrous (sp?) which is basically the bone dying and can lead to major problems. I think you need to get a second opinion before you dive into this dental surgery without HBO.

I havent' read it, but try the dental section of this web site and see what it tells you.

Please someone else more qualified to address this, update this issue.

Thanks,
Eileen

Hi J,

Interesting set-up with the father and son team. I was wondering how you would have all the work done by a surgeon. Makes sense. We do the same thing in our office, but not by a father and son. Good luck.


It is "panoramic" x-ray, just like it is used in photography.

Jerry

Jerry - Can you address the issue of ORN in more detail? My knowledge of it is very limited and I'd like to know more. What are the risks? Nelie posted about IMRT limiting the risks. How does that work? Your input would be very welcome. Tom

I would not pull that broken tooth. You are inviting a problem. I would do a gold post and crown. First endo is done on the tooth to remove the pulp chamber and the neurovascular bundle in the root that feeds the tooth from the primary above or below it with blood. Then the dentist will drill out a small receptor site down into the remaining portion of the tooth and root and make a direct pattern of it using a self-curing resin. This will be sent to a laboratory who will add some wax to the supragingival part of it making it a shape kind of like a crown prep on a natural tooth. Then you will revisit the dentist and he will cement this gold post into the root, and a crown can be made over the whole thing. Even though the tooth will be dead, it will be come ankelosed into the bone, with the fibers that normally hold it into place desiccating, and it will be safely and permanently there as long as you keep it clean and do not let periodontal disease creep in. All this circumvents an extraction that could lead to a non-healing socket due to lack of blood supply and micro vascularization

Guys and Gals,

Thanks for all of the information. I had the panoramic x-ray done last week. I have to go in for a consultaion before we decide on anything. This should occurr this week. I'll let "yunz" know what all of the medical professionals say. I've heard of the ORN before. My ENT explained it to me. And I will ask him to explain it again.

John

Hi Tom,

Osteoradionecrosis...bone that has received doses of radiation may lack the ability to repair itself after trauma. Radiation destroys the blood vessels in the area causing a reduction of circulation to the area of oxygen and other nutrients. This then will prevent normal healing in that area if the bone is injured.

Hyperbaric oxygen to the area will stimulate new blood vessel growth and therefore stimulate bone healing.

Without hyperbaric oxygen, removal of a tooth will probably result in bone that won't heal.

This is a good article: http://www.virginiamason.org/dbHyperbaricOxygen/sec181033.htm

I don't know about the relationship of IMRT radiation and ORN. sorry

Hope this has been helpful.

Jerry

Jerry,

Is ORN a permanent condition, or does it improve with the passage of time? Can ORN be detected by the panoramic x-ray?

John

Brian,

I definately agree with you and my philosophy is that it is almost always better to save a tooth than extract and replace it. This goes for any patient, with or without having been subjected to radiation.

As far as root canals, posts and crowns are concerned, in John's case if we assume that there is an option of saving the tooth i.e. there is enough tooth left to restore it and that endodontic treatment is possible, this would certainly be a better option than extraction.

Given that this is the case, after the root canal is completed, a post is placed in one of the canals. There are many types of posts, some of which are made in a laboratory and some of which are prefabricated and come in a kit. The crown can then be made by a dental technician after an impression is taken or the whole procedure, post and crown, can be made in the dental office with a CAD/CAM out of a block of porcelain. I've been doing crowns this new way for about 7 months and they have been very succesful.

Jerry

John,
You are not 'getting it'. ORN is a condition that probably will not go away and you can 'wind up with your leg bone in your jaw to correct it IF you are lucky'. Do these medical professionals normally treat patients that have had radiation? If not, you need to get a second opinion from some that do before you have this surgery. You need to be dealing with a surgical team that has experience with cancer patients. Reread Brian's reply or better yet, print it off and take it to your appointment.

Eileen

John,

I would be guessing but I think that once the blood vessels have been re-established, they will remain there. I'm not sure if a definite diagnosis of ORN can be made from a panoramic radiograph.

You might try doing a Google search for "osteoradionecrosis". There is a lot of information out there. That's where I got the link I used above.

Good luck and please let us know how you make out with the consult.

Jerry

Jerry,

I'll let you guys know as soon as I hear something. I have a lot of questions that I'll be asking at the consult. One thing I know for sure is that I have total trust in my ENT. If he told me to run into a wall, I'd do it. It's a comfort to me and my family to know that he'll be part of the decision making team. If I had any questions with any part of my treatment, be it chemo or radiation, I knew that I could always ask him. If he didn't know the answer, he'd find out or direct me to someone who did know the answer to my questions.

By the way where is Yardley, Pa.?

John

Yardley is in Bucks County, North East of Philly, across the river from Trenton, NJ.

Where are you?

John, here is a site that has more information. http://www.emedicine.com/ent/topic579.htm You don't want to take any chances with ORN. A while back, I had read that even Novocain shots can be enough injury to cause ORN to the already compromised bone. It is not the Novocain itself but the vaso-constricting drugs commonly mixed with the Novocain that stops the already slowed bloodflow.

All here, whom have had radiation to the jaw, need to be very careful about even minor injury to the jaw.

Mark,

As a point of information, if in fact local anesthetics with vasoconstrictors can cause a problem, there are many locals that don't have vasoconstrictors. Most oral surgeons use local, even when the patient is asleep for surgery, but they can use one without the vasoconstrictor. They do this so that the patient doesn't wake up in pain and there is time for the pain meds to kick in.

That was a very informative article, but not for anyone with a weak stomach.

Hi Mark, Jerry et al,

I'm having pain with one of my front lower teeth, (throbbing, caries). And I don't really have much bite left because of shrinking teeth

When I recently visited my H & N Clinic for the usual nose scope, I mentioned my teeth, HBO, ORN etc. This Radio registrar (not my own ENT/ONC/Surgeon) said that because my cancer was tonsillar with met to the neck, judging by the 3 fields of radio (not IMRT), losing a tooth at the lower front should not be a problem, or a root canal (who can afford one of those now?), as that was not in the radio beams sites. Anyone else had similar opinions?

I thought that any radio in the H & N area would affect the whole mouth and neck, reduce the capillary blood flow in the jaw for quite a long time. Correct me if I have been misguided, but that as been most of my journey from the beginning since diagnosis...(except when I found OCF)

HBO is difficult to get here, because of insurance companies, and there is only one in Sydney! In this doctor's opinion, HBO shouldn't be necessary for most patients, a rare occurrence...(not from what I have read elsewhere )

I haven't been brave enough to visit my dentist yet (will do soon, because of the ache/pain), as I think I may have to lose that tooth, perhaps a bit far gone methinks...

Cheers!

Tizz

Thanks Jerry,
I would believe that we could tell our dentists not to use local anesthetics with vasoconstrictors If they are doing work on the lower teeth. (in most cases the upper teeth and above are not radiated directly).

My apologies for the graphic photos, I did not scroll past the text to see them the first time.

Curious that the risk of ORN increases fo all of us as we get older.

Can anyone address the issue of long-term bone/soft tissue health after radio? Do we recover any additional blood flow, regenerate any new circulation as we travel past Tx? Is all that radiated tissue completely static, or does it slowly regenerate into 'healthier' tissue?

Jerry - Thanks. Tom

I'm no expert but from my own questioning about this, I'm fairly sure the bone does not recover at all, at least not without HBO. At first I was under the impression that over many years, it would heal soemwhat and ORN would be less of a risk but my oral surgeon who has a good amount of experience with this said no, the risk never gets to be less. Bone that has been radiated is permanently damaged. (And then I imagine that as we age, it could get worse as bones get more brittle with age anyway). I don't know about after HBO--does it stay permanently better?

I also don't know about soft tissue healing. I know that I have read here of patients who were sent for HBO to heal soft tissue damage from radiation because they were told it wouldn't heal otherwise. But then so many people here have stories of regaining function and having less swelling, etc. up to a couple of years out from treatment that it seems soft tissue must heal on its own sometimes.

I do know that if my throat does not appear to be much more healed the next time my ENT scopes me, and especially if I'm still having major swallowing problems after a few months of swallowing exercises, I'm going to ask about HBO treatment. If my insurance covers it, I want to try it.

Mark, Thanks for that info. about novocaine shots. I was wondering about that.

Tizz, the impression my oral surgeon gave me ws that sites that are not directly in the field of radiation are not as risky for ORN. He said he woudl want to see the exact raidiation plan before making a decision about any kind of oral surgery and whether I needed HBO.

Nelie

Jerry,

I live about 50 miles south of Pittsburgh. Washington Co. Go Steelers!....... Yeah right!

Thanks for all of the information guys. There is a lot to digest. I'll keep you guys updated as this thing prgoresses. I'm wondering if the HBO therapy would expedite the healing of this fistula that I have? Something that I'm going to take a serious look at.

John