More Dental Stuff

fishmanpa said:

Bungle in the Jungle

I don't know Foo,

I've read some recent threads that have been talking about dental issues from rads. It's more of a long term issue but  I've not seen a post on any forum that said "Great teeth going in, no problems since". 

I don't think I can do much more to head off potential issues but I do want the straight dope on it. In the mean time I'm not going to stress about it. Worst case is I have to get dentures... ehh... big deal. With heart disease and now cancer, there are several factors that can take me out and teeth aren't one of them

Positive thoughts and prayers

"T"

 

Based on the numerous posts, this teeth/jaw thing is a real issue to be at least concerned about if not more activey managing post tx and getting on the mend as it does seem to be longer term in nature. I read posts now and then about people having major issues with jawbones weakened and teeth being extracted and all this stuff about HBO but now it seems much more real.

What I don't understand then is why is this not given more discussion by the doctors at this stage? Is it something there is little to do now and just one of the longer term side effects to be dealt with over time and part of the one step at a time mantra? I mean while we are all still cheering for NED NED, having extracted teeth undergo HBO therapy seems pretty small.

rachel12yrsuv said:

T,
external tx, teeth in

T,

external tx, teeth in super great shape Prior.  They wanted to pull all molars prior to starting I said no, hindsight I wish I had.  I had trays and used them as I could tolerate the taste gagged me and with food aversion made me I'll.  although I required much dental work over the years it took 8 before I lost any.  I am now looking at removing the balance and getting dentures , they are so soft and brittle once I finally eat something of substance I'm sure another one will break.  It has been my hardest pill to swallow, I had awesome teeth and was very proud of them and now YUCK, see that's why excessive pride is a sin, sorry God! Lol

hope this helps!  Take care Buddy!

RAchel

 

Why do you wish you had your molars pulled ahead of time?

MarineE5 said:

I found this on line

Debbie,

I did a quick search this morning and found this, I am not sure how helpful it is to you, but you can read it.

http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&slide_id=1591

I seem to recall someone on here that may have had their Dental work paid for by Medicare, but I forget who it was.

My Best to You and Everyone Here

Thanks MarineE5 that helped.

fishmanpa said:

Be aware

Thats my point about this subject. The seriousness of the dental aspects of radiation therapy were not really addressed prior to my treatment other than I needed to take care of any "potential" issues prior. It wasn't until I read about HBO treatments, jaw replacements and such that the gravity of this potential side effect reared it's ugly head. It "seems" the vast majority of H&N survivors have some issue. It"appears that it's not a matter of "if" but "when" we'll encounter more complicated issues above and beyond a cavity or crown. 

Obviously, one should not become consumed with this issue just like any other issue about our cancer. All we can do is the best we can do and take measures to make sure we do what is best for us both physically and mentally. The purpose of the thread is to gain some idea of a standard of care. If the fluoride rinse I'm currently using is not as effective as trays, I want to know that. If there's a toothpaste that is recommended above others, I want to know that. 


"T"

 

 

"T",

Like you, I was concerned about the outcome of switching from Trays with Flouride 1.1% Gel to Toothpaste with the 1.1% Flouride in it like the Gel used in the Trays. I was concerned about future affects, does the toothpaste equal the Gel?

My study history is as I mentioned in other posts. 5 years using Trays with one drop of Gel for each tooth in the Trays. No cavities, only problem was the cracked teeth from me biting on some hard food, caps installed and all is well. At the 5 yr mark, switched to the Flouride Toothpaste, same Flouride level 1.1%. Difference is that I brush it on like I am brushing my teeth normally, instead of rinsing with water right after brushing, I spit and let the remaining little bit set on my teeth for 30 minutes just like I used the Trays. As mentioned before, I tend to over do things, so I try for 60 minutes if I can, if not, after 30 minutes, I rinse and gargle as usual.

Results for the last 3 plus years, no cavities so far. I use the Previ-Dent 5000 toothpaste. So, in my own little study, the Trays Flouride Gel and the Brushing of the Flouride Toothpaste are equal in my results. I will know better at the 5 year mark of brushing. I have not cracked anymore teeth as I am careful to watch what I am eating.

I was lucky, the Hospital that I was treated at was a Teaching Hospital. They had a Cancer Team that included a Cancer Dentist who was up front about the care of my teeth and future problems. He made it very clear that the care of my teeth would be for the rest of my life and if I couldn't commit to the program, then get Dentures after all my teeth were removed and after treatments.

I was also told by him to make sure that no matter where I get my teeth cleaned to let them know not to do a DEEP cleaning, as the gums could be damaged and cause issues down the road.

My Best to You and Everyone Here

Skiffin16 said:

My Thoughts...

Of course each of us are different, as are our MD's and their thoughts and concerns...

Going into treatment, the main thing is to kill the cancer and deal with the after effects after... If there is a clear threat such as bad teeth going in, they will try to address that upfront, I know of more than a few that have had all teeth pulled going it, both young and old.

Myself, I had a good check up pre-treatment by an MD that was H&N Cancer familiar... and had no pre-treatment work done...other than to use fluoride daily. At nearly four years post rads, I haven't had anything by way of concerns that weren't there before treatment. Maybe 1- 2 cavities a year, and a crown every few..., which is the same for the neareast few years pre-cancer.

As for molars and wisdom teeth expecially... If you have had problems before treatment, more than likely you are going to after treatment..., get them pulled upfront and be done with it.

I have no idea if I'm going to have additional problems down the road as a rsult of radiation, or what that might consist of concerning HBO, or other modes... I am alive, I am cancer free, and I will deal with those issues IF and WHEN they happen...

Like everything else, don't wish stuff on yourself or be consumed with what ifs on things that may never happend, or at least not happen for several years down the road....

Be informed, be aware, take what reasonable measures of protection that you can..., but don't be consumed.

JG

One side of fence is get through what is critical now - kill cancer and deal with side effects that present at that time; there are so many other potential medium and longer term side effects -- deal with those as they arise or at least at a time when you have more bandwidth and capacity to deal with more than the immediate battle you are facing at present.

The other side is to be as proactive as one can be and aware and doing as much as one can to stave off as many potential side effects as one can even before they present; or, even better incorporate some small tweaks to your daily regimen to minimize some future side effect.

In the case of medium/long dental issues. this is becoming as bigger issue for me too and I am certainly in the proactive camp and have capacity to deal with some adjustments to daily routine such as adding flouride application through trays or at least switching to high flouride toothpaste such as PreviDent 5000 Plus; no harm or even any extra effort, so why not if it can help minimize teeth issues later.

As to jawbone side effects, it seems those related side effects are generally going to take whatever course they are since these seem mostly based on how many rads got to the jawbone area. Some jaw issues can be caused by the extractions and infections and such but it seems the really extreme jaw issues are deep bone failing caused by the rads.

So can I get my MO/Ro to prescribe the PreviDent 5000 Plus 1.2% paste or tray gel? It seems to be prescription which is fine with me as it would be cheaper than out of pocket.  don

Going on 13 1/2 years since external beam rads.  4 Wisdom and 8 molars pulled before treatment.  All were healthy one wisdom tooth has a little decay before treatment and was impacted.  Since treatment a few more have broken or fallen out.  I use ACT flouride along with Crest Pro Health tooth paste.  Never had a cavity before treatment but have had plenty since. 

During treatment it was very difficult to brush and the flouride in the trays burned so I didn't do it.  I'm paying the price now.

According to my dentist, I have the start of Osteoradio Necropothy.  So eventually I will probably have to have my jaw removed and replaced.

fishmanpa said:

That's my concern

I have the same concern. I live in a small town and it's a private practice. I can't imagine he has had vast experience in H&N cancer.  He did check everything and extracted a tooth that would have been an issue. However, it makes me wonder why my team didn't suggest I see their dentist at Johns Hopkins based on the number of issues I'm seeing here. I'll be asking that question via email to them. 

I've not had any issues with my teeth other than a painful sensitivity to cold. I understand that's pretty common though. I just want to be prepared. It's hard enough dealing with the life changing aspects of this cancer. It's another thing all together to face losing your teeth and have your jaw rebuilt! 

"T"

T, 

i find it odd especially at John Hopkins that they didnt send you to their dentist.  I went to Univ. of Penn and that was part of what i called the circuit.  First surgeon( ENT Onc and head of the dog and pony show), then rad, the hemotologist, then audiologist, and then  Dentist where i stated before i thought id won a battle by not removing molars, still wish i did.  I currently at 12.5 have 15 teeth left 10 of which are broken to some degree.  Like you said it doesnt matter if they were great going in, mine where a dream, it takes everybody just depends on how long.  Watch soft palate to that as did mine can paralize and not close to block things from getting push up to nasal cavity also if that doesnt close air escapes when you talk and affects your voice.  Not to scare anyone, especially you T being in sales and a singer, i have lost the quality of my voice largely and a considerable portion of hearong in both ears which led to the end of my 22 year career as a Flooring salesperson(successful too not to brag) both to the trade and retail public. See dentist, see audiologist and speech therapist to keep all these things in check.  I dont know what if any are avoidable bjt if you catch early you might fare better.

sorry for downer, please just take all this seriously!

Love to all,

Rachel

fishmanpa said:

That's why....

Rachel,

Did you ever think it's because of the rather discouraging long term prognosis that some of the issues aren't discussed in detail? Seriously... 5 year is 50/50. The chances of metatisis within the first 3 years is high. I'm also challenged with heart disease. Two heart attacks in the last five years. Frankly I'm falling apart! ~lol~ 

There are several issues that present themselves years down the line that weren't/aren't initially discussed. I did have a baseline hearing test done when I started and did not suffer any hearing loss or tinnitis. Eyesite was checked. No problems. 

I met several times with my Speech Pathologist during and prior to the end of treatment. I have exercises for swallowing that unfortunately I've not been able to keep up on as much as I could because I'm not taking anything but water by mouth. My throat feels Ok but my mouth is still singing the blues with pain and burning. I'm taking Nystatin (2nd or 3rd day) as I saw some white patches (thrush) in my mouth. It's helping but it'll be a few more days until it's gone completely. 

The dental issue does have me concerned. My team asked about my dentist and I did have a thorough exam. One tooth extracted and a thorough cleaning. I don't know nor did I ask about his H&N experience. In reflection I don't think he has that much experience as his is a private practice in a small town. My team did get a letter explaining everything he did and his contact info. I don't know why they didn't recommend I see the dentist at JH. I sent an email off today asking some questions. My teeth have been very sensitive to cold and some of the liquid meds hurt them as well (Nysatin makes them sing for a few minutes after swishing). 

As I sit here recovering, I've been reading quite a bit. Checking out threads and subjects here on the site and other H&N forums. Some of the things raise concerns but then at the same time, the initial challenge is just getting to the point of feeling somewhat normal. I'm FAR from it. Three weeks out and I'm not seeing the kind of improvement I'd like to see. My greatest challenge right now is fatigue. The fatigue has ramped up quite a bit in the last week. I was thinking it would improve but it hasn't. I've been sleeping 10+ hours a day. Unfortunatey it's a fitful/restless sleep. I'll sleep a few hours and awaken totally dry with my mouth in agony. Lawrence of Arabia could get through my mouth! I'm up just enough to get the pain meds into me and aliviate the mouth pain and then BAM.. I'm out again. I'm still sleeping in the recliner as I can't get comfortable in bed yet. 

I'm challenged in the eating department as well. All my nourishment and the vast majority of hydration is through the tube. I'm beginning to think I'm having a mental block concerning eating. The last time I had food by mouth was April 23rd. I'm fortunate that I have my taste buds but it seems as if they're hyper-sensitive. Smells are making me queasy as well. Marcia made some seafood and pasta and I had to go upstairs because the smell was making me sick ~sigh~  Maybe I should look into speaking with a therapist. 

I hadn't mentioned it previously but I had a wicked gout attack in my left foot about a week ago. It's finally easing up but I found out that gout is a side effect of Cisplatin. Great eh? 

It's not a downer Rachel, it's reality. I know all about "one day at a time" and all the other cliches and I work hard to maintain a positive attitude and for the most part succeed at keeping it, But I'll tell ya... I'm tired.... I'm ready to wake up and actually feel good!  It's funny... Marcia will ask me how I feel when I wake up and I always say "I don't know yet" ~lol~  It takes me at least 10 minutes to know where my feet are let alone walk to the bathroom! Once I determine I'm doing Ok then it's time to get a few things done before my gas tank hits "E" again. 

Positive thoughts and prayers

"T"

 

T,

i am sooooo sorry if i offended you.  I thought uou wanted open and honest to help people.  The things that happened to me where because for some reason that is the path the Lord wanted me to take.  I was more trying to  heads up so mone of this happened to you or someone else.  I am so embarrassed that i offened you or anyone else.   One thing you have to remeber is 5 yrs 50/50 not true youll be here as long as God wants you here no matter what the docs say.  Npc stage 3 had downs yes but many ups and so far mnock ln wood i kicled 5 yrs **** and its been 12.5 yrs and everything that has happened since has made me a stronger, better person.  I was blessed with a daughter i thought woild only be a dream, with many odd things wrong with me i found a man after divorce who loces and supports me and asores my daughter.  Everyday i wake up i thank the Lord for another day and the value of that day, if you had not had this experience you wouldnt appreciate each nreathe the way we do.  I should have kept my mouth shut before but i felt a strong pull to respond, in the future i will watch how much info i pass on, again i am sorry!

Love to all, Rachel