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fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hi Folks,

I've been following Sheilarhc's post on dental implants. I know prior to treatment I had to be cleared by my dentist. I had one tooth removed and a cavity filled as well as a thorough cleaning. My dentist recommended using a childrens fluoride rinse (Listerine) as opposed to trays. I rinse with it twice a day (am & pm). It has a pleasent taste and no burn. I found it difficult to maintain a normal schedule of brushing and rinsing due to the side effects but I managed to at least brush a minimum of once a day and rinse. While I don't have perfectly healthy teeth, my dentist said that mine were in pretty good shape and should fair well. The only side effect I feel is a sensitivity to cold liquids. 

Reading through this and other H&N cancer forums I've noticed that dental issues are prevelent for many. It also seems to be more prevelent for those that had radiation more than 5 years ago. In other words, it appears that those that received external beam therapy as opposed to IMRT have more dental issues. I may be fortunate and not experience any issues but it seems most everyone does to some extent. 

Thus my questions....

For those experiencing dental issues, what type of radiation therapy did you receive? How many treatments did you have? How were your teeth prior? Did you use fluoride treatments/trays/rinse? How long was it until you started noticing issues? 

I want to get an idea of what I should be looking out for in the future.

Thanks! 

Positive thoughts and prayers,

"T"

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Though I haven't hit the five mark yet, I had;

IMRT

35 daily rads sessions

Right Side - 70Gy

Left Side - 60Gy

Never had the greatest of teeth going in..., many fillings throughout the years. A Root Canal and Crown B4 Tx.

Since Tx, a few more fillings, two crowns, not that uncommon based on my history the last several years.

I used the Oral B- STOP Fluoride Gel, and still do, only once or twice a week now. I used it pretty much daily during and right after treatment for the first year or so.

JG

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

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

 

LCSister
Posts: 13
Joined: May 2013

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

LCSister
Posts: 13
Joined: May 2013

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

SeaUSoon
Posts: 5
Joined: Jan 2013

I had IMRT

33 sessions

72Gy

52-55 Gy to mandible

Used fluoride rinse

Teeth started flaking off and turning to powder at about 4 mths post treatment

Had good teeth prior and dental work prior

Just finished 20 hyperbaric oxygen chamber treatments and had all teeth extracted yesterday. Have 10 more HBO treatments starting tomorrow

Hope this helps ya!

Walt

D Lewis's picture
D Lewis
Posts: 1546
Joined: Jan 2010

Had IMRT, 36 sessions, "68.4 GY with 150 mg/M2 total", fried both sides of my mouth.  Dental hygene was great going in, several fillings dating from my youth, several crowns as a young adult, no inflammation or gum disease. 

My tongue and gums were so badly burned I was unable to brush for the duration of my treatment. I flossed gently with fluoride floss, rinsed and swished, and used fluoride trays whenever I could stand it. Since then, I have brushed four or more times per day with Prevident, and continued the use of fluoride floss.  I have no saliva, and it's difficult to clear the food from my mouth and from between my teeth, after eating.  I use the Biotene rinse.

Since end of treatment, I've had two fillings replaced with crowns, as they were old, and cracked and rapid decay started.  Had no ill effects, and they healed up okay.  No hyperbaric treatment, although my ENT insists I will have it, if I ever need an extraction. Dentist is very pleased with my hygene and gums.  I'm not so pleased with the way the teeth look, but they seem solid for now.  Seems like they darkened a bit, after radiation.

I am hesitant to bleach them because I've no idea how it will turn out, absent saliva.

Deb

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

Wow….I had no idea so many other people have had similar issues. I guess I thought I was the only one. I’ve found great comfort and information regarding this topic since I started the forum. 60Gy IMRT (believe it was 35 treatments) Teeth were perfect prior to treatment. Started having trouble 2-3 years after treatment. Facial swelling and random fevers landed me in the ER several times before an ER doctor told me he thought it could be related to my teeth. I thought he was crazy because I saw my dentist every three months and used a fluoride rinse and I had NO tooth pain. The dentist I was seeing back then always told me that my teeth were perfect and unaffected by the radiation. I asked him for fluoride trays several times and he told me I didn’t need them…..how wrong he was. I have terrible gum recession and pain. I’ve had 4 teeth extracted on the bottom (20 dives in the hyperbaric oxygen chamber). Several root canals and recently all my top teeth were crowned. Had my first gum graphing maybe a month or so ago and it was a complete failure. The new tissue didn’t graph to my old tissue and now I have more root exposure than before the surgery. My struggle continues and next week I find out if they are going to attempt the gum graphing again. I hate that I live on pain meds, I hate that I’d rather starve than put myself through the agony of using my teeth, I hate that radiation has caused so much grief in my life yet I’m grateful it helped save my life. I’ve felt so alone with this struggle as many do not understand. Thank you for keeping the discussion going, I no longer feel alone and I’ve learned so much reading everyone’s experiences. Thank you, thank you, thank you and God bless

 

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

T,

I had periodontal disease since my 20s. Some 30+ years of planing and scaling, root canals and crowns. I put so much time, energy and money into keeping my own teeth only to have them pulled to remove the cancer in my lower jaw. Since tx, I have had 1 root canal. There was no exterior decay on that tooth so they felt the radiation destroyed the root internally. I could only wear my floride trays 2 or 3 weeks into tx then it just burned too bad. For months, I was only able to us MI Paste which is a polishing paste but it didn't burn. I just finished HBOT 30 dives in anticipation of implants to hold a permanent denture.  

hawk711's picture
hawk711
Posts: 532
Joined: Jan 2010

Hi All:

I am 3 years post treatment and am now have huge issues with my jaw.  I think it is teeth related but not sure yet.  Have MRI this week.

About 3 weeks ago, I had a swollen, infected left jaw.  Believe I had an infection in my Massoteric space (muscle).  ANyway, great pain at this time.  My dentist says pain could have come from a tooth.  All my teeth feel and look o.k. but she said that doesn't matter, it could be the root cause for the infection.  In reading your comments, I think I am having many of the same issues you two have had or are having.  I had no issues for 3 yeasrs and now WHAM, I got big issues.  I also cannot open my jaw more than 1" and was over 2" 4 weeks ago.  Did you all have this issue when you had the teeth issues????   I will try to keep this topic going as I think the teeth are the issue that all the newbies may have in 2-4 years and should be discussing with their doctors now....I'm sure that many who were on the site 3-4 years ago just don't come back to this site and report how they are doing.  I know DLewis and I are the older posters on this site, next to Skiffin and Hondo.

I'll let you all know what my MRI shows and keep you advised.  My dentist says that HB Chamber may be necessary for me if I need to have teeth extracted too.  

Live each day happy, all the best,

steve

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

"keep this topic going as I think the teeth are the issue that all the newbies may have in 2-4 years and should be discussing with their doctors now...."


I'm sales and marketing director for the CD/DVD company I work for. Keeping your name or product in front of the customer's eyes is one of the key ways to keep the phones ringing. This is a similar thing and one of the reasons I posted the subject. We all need to be aware of the issues radiation side effects can produce down the line, especially newbies like myself. I knew there could be dental issues but they were kinda glossed over in my case.

I still need to do some more research into the subject but as Steve stated in the above post, it's something that needs to be in the forefront of our minds as we recover from treatment and move on with our lives. The complications and challenges presented by our future dental health on top of all the other challenges isn't exactly encouraging. The products used are as varied as the advice from dentists. I'd like to see if there are some standard of care type documentation from the ADA concerning dental care for patients that have had radiation of head and neck.

I'll look further into it and share what I find. 

"T"

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

Hi Hawk,

I did have facial swelling and pain in my jaw, however, I never considered the source to be my teeth.  I agree with the many others that going into treatment the goal is to kill the cancer and worrying about our teeth is not on the list of priorities.  Having said that, my concern is that there was NEVER any spot light put on what could happen to my teeth post radiation.  I was never told to seek a specialist and was only seeing my HMO dentist who had never dealt with a Head Neck Cancer patient.  I could kick myself in the butt when I think that I went back to see him even after he missed the 6cm tumor in my check that was clearly visible from the inside of my mouth. Sorry, getting off topic.  My teeth at the time were not bothering me so when I was having the issues with fever and facial swelling I had a hard time believing it was tooth related.  It’s very important that IF that is the issue you are dealing with you seek treatment from a specialist.  Originally my family dentist scheduled me to have a molar pulled and I was the one that said, wait, I thought I read that someone with my history could not just have a tooth pulled.  I went to Loyola Medical Center here in Chicago and even they had a hard time deciding if HB chamber would be necessary prior to the extractions.  I made the decision to just do it and I’m grateful that I did. 

My whole journey with teeth issues has been difficult.  Just by looking at my teeth you would never know the damage that was going on.  I remember one dentist I saw told me it was a pity because visually everything was good. I too have difficulty with my jaw opening.  I try to stretch the jaw a little every few days by inserting popsicle stick into my mouth (kind of propping it open) in order to stretch my muscle.  It’s painful but it has helped give my just a little bit of a wider opening.   I wish you the best with your MRI and please keep us posted.   

metro22's picture
metro22
Posts: 16
Joined: Apr 2013

My surgery at mayo late March was Tonsil area, hypopharynx and nodes in neck.  Will begin rads as soon as my dental work  heals.  One radiation oncologist agrees that data about osteonecrosis uses much data from older machines and today control is better. However my Radiation oncologist strongly recommends to all to remove all teeth as she has seen  osteonecrosis. I think most now suggest removal of all 12 molars as they are more in the path of the rads. I went to and Oncology Suppoprt Dentist as we selected 15 teeth to go leaving some front upper and lowers to help hold futures dentures. 5 hours ago I started the 2 hour procedure to remove 15 teeth  and at the moment I am biting on  wet  tea bags wrapped in a layer of gauze as the  tannic acid in the tea bag helps to form a clot by contracting bleeding vessels. One wisdom tooth was impacted and the surgeon was even worried that my  jaw may break on its removal. It didn’t so hopefully in a few years it may get stronger. I took a double dos roxicet 5/325 2 hours ago and it took the edge off but paid still about 5+. They said typically the worst day is the third day and then it improves.

My dental surgeon believes that after rads the upper jaw, blood supply improves a lot after 2-3 years and is they safer to do extraction. The lower jaw takes longer and may not recover as much so even more caution.

 

Wow – even  though it has only been 2 hours since taking my roxicet the pain just now is increasing toward an 8 or 9 – I think I will try the lower dose but every  two hours – yikes this hurts  - but trying to prevent possible terrible situation in the futures, Wishing all well

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

Damn,

All this talk of busted and broken and disintegrated bones makes me shake. Now, overall the percentage of ppl losing teeth or having major jawbone issues seems quite low to me. It just feels like this thread brought out the tigers from the jungle.

 

I had two teeth extracted as they were abscessed and not doing anything particular now other than regular brusing with a flouride paste. My saliva production remains good and dry mouth is not an issue for me at present.

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

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"

 

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Man, I must be "Thick As A Brick"...

it's been awhile, LOL...

JG

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

But the tune ends too soon for the song...

"T"

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

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.

 

HelenBack
Posts: 63
Joined: Jan 2013

I'm shocked to hear of all these problems, since it really hasn't been touched on by our doctors. Our original Rad Onc, said it would be fine to get a check up from a regular dentist, so we went to see our regular dentist who doesn't seem to have any experience with head and neck radiation patients. I'm pretty sure a more specialized doctor would have recommended that my husband have his wonky wisdom tooth extracted on the heavily radiated side. I'm very concerned that that will cause him much trouble down the road but the rad doc made it sound like no big deal.

Grr.

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

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"

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

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's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

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"

 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Frown

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 ass 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

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Sorry for typos darn iphone

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Rachel,

No offense taken at all! None whatsoever!

Don't hold back on what you have to say by any means. The fact is, what you posted is what everyone needs to hear from the get go! I'm obviously frustrated with my situation. I'm tired of being sick and tired. Sometimes I read threads here and elsewhere and the facts have sugar sprinkled on them. I'd rather have them straight up, no chaser ;)

I know I'm fortunate as many here have had it a LOT worse than I have but dang! Medical science has come a long way in the last 10 years and you'd think they would help prepare you better. I'm not griping on the level of care I received. They saved my life at JH. I would not have been so fortunate at the hospital I started at I assure you!

Again Rachel. you did not offend me in the slightest way. I needed to vent and as I read my post again, it's exactly what I was doing. 

Positive thoughts and prayers,

"T"

 

 

 

 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

T,

i am glad.  I wasnt sure if it was me that told you too much or that the hospital didnt say enough.  In my case they did warn heavelly about teeth, told me it was a study about the effects of cisplatin and rad on hearing, never said i could lose my hearing.  Did know about dry mouth and scarring down of jaw, but nothing about soft palate and swallowing and my voice.  Each side effect took a hit emtionally, i liked selling flooring i loved my contractors but i counlfnt communicate right with them and they slowly found other people, it hurt( my ego more probably).  But no one can take from me the pride of the battle i fought and won,  it even tries to take from me again and again through the years but not one side effect made me wish the alternative happened, and that good or bad i missed one day in the last 12.5 yrs the Lord blessed me with and side effect or not i hope He continues to bless me with years more and the strength to face anything lingering aroung the corner.

hang in there, rest when the pain lets you, it does get better i PROMISE

Love,

Rachel

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

My point.....

Even with all of those warnings, awareness, possibility of some pretty bad "Longterm" side effects, would have you opted to not have treatment? I know that I was pretty aware of most of those potential longterm side effects.... I still would have opted for treatment as I did...

If the cancer killed me short term, I wouldn't really matter about the longterm effects of treatment....

I mean what alternatives do you have...

A lesser form of treatment, with the potential of recurrence, or not doing as much upfront as possible...

I think the MD's see it as doing as much as they can to kill the cancer, without killing you first of course. If they don't accomplish that, no need to worry about long term future...

JG

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Exactly John and NO i wouldnt have changed anything, i was too young and i wanted and still do to LIVE!

Thank you Jesus for it all,

Rachel

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

T, while you want it straight up, and even you yourself are frustrated at times concerning lingering effects from treatment..., not everyone can handle it straight up. It might even be counter productive for them to know things could go south one way or another down the road as aresult of treatment for cancer.

I'm not trying to defend the medical community or how they prepare patients. I'm sure they are as different as each of us are.

From my perspective, I think the intent is to keep you as positive and hopeful as possible initially. Someone with hope and a positive attitude will respond better than someone with a lot of uncertainties and negative thoughts.

Get you through the battle of killing cancer first, deal with the possible side effects after you survive.

And again, I can pretty much assure you that you won't get all of the possible long term side effects you have concerns with. Some you might, some might be totally unrelated as each of us get older.

The point where you are currently, treatment over, but not recovering as fast as you would like is something that we all go through. That's where it comes in when you hear recovery is measured in weeks and months, even years on some things.

I'm a big believer that positive thoughts, determination and will power is huge...

Look at people like Lance Armstrong, regardless if he did or didn't use performance enhancers.... Look what he has overcome and accomplished.

For me and where I am, which I know is a few years ahead of you, but I am thankful to be alive (which I know you are, no question about that), but I'll deal what the future brings me as it plays out.

And again, like you agree, be aware, but also know that each of us are different you may not ever have some of the long term side effects that are possible.

Anyways, my thoughts on it..

JG 

 

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Thanks John,

I appreciate the point of view and I agree with you. I don't know how many times I heard this about treatment: "They practically kill you to get you better". Well,  getting to that point was a lot more challenging than I could have ever imagined. Granted, the alternative is fertilizer so there's no doubt in the plan of action to rid me of the cancer. 

Overall, I've not suffered many/most of the side effects listed for rads/chemo. Considering my age and medical history, I fared rather well considering but I'm frustrated (can you tell?). Having to feed and hydrate myself from the PEG to the gout attack to the fatigue etc. has me practically climbing the walls. I miss work! My goal was to at least be back to the office by next week part time (4 hours a day max). If there's not a dramatic improvement in the next week, that's not going to happen :(  
It's a catch 22 in that I need to get back to the physical therapy for my shoulder as well as swallowing exercises and I'm limited due to the side effects I'm dealing with... ARRGGG! 

The attitude aspect I know was key in me getting through this thus far. To say things got pretty rough is an understatement and sugar coats the reality. There were times, and there still are, where I had/have to withdrawl totally into myself just to deal with pain and frustration. However, it's that inner room where I gain perspective. There's so much going on in the present that needs my full attention. I've been blindsided a few times in my journey and that's what I'm wanting to avoid. 

Thanks again for your post. Sometimes seeing in writing what you already know is the nudge you need to keep moving forward.

"T"

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

You are only in control and in charge to a point... Your body is what is really in charge, if it's not where it needs to be for you to accomplish the goals you have set, it's going to let you know...as it has.

BTW, from above..., did you think killing you, or nearly doing so would be easy, LOL... I know you are tougher than that, you're like me, you're going kicking and screaming...

Adapt, that's a key... control what you can when you can, and adapt to pan B when needed. Accomplish those things that take more energy and thought when you can, push the less physical things to the times when you have less energy to deal with them.

You seem to have everything down as for calories, hydration, meds, etc...

It's just the part that you don't have a few things where you want them as of yet...., you will I promise. But not a minute sooner than your body is ready.

Now might be a good time to get some of those creative juices flowing that takes more mental power than brute strength... Catch up on the things that you hate normally, but never have time for.

Just re-direct your plans and schedule to fit your energy and strength...

You have done amazing, and though YOU don't see it at times, we that have been in your shoes do...

JG

 

MarineE5
Posts: 762
Joined: Dec 2005

John( Skiffin16) wrote....

 

Just re-direct your plans and schedule to fit your energy and strength...

That is what I did and continue to do. I have a mental list of things that I need to do along with a list on paper. Each day is different, some days I feel like I need a nap shortly after waking up, other days, I feel pretty darn good and can get things done. I do pay for it the next day or two, but as John wrote, adjust each day to how you feel now. As mentioned, we find a "New Normal" and adapt.

You will get back to the level you want to be at eventually, there is no set date in any of this.

My Best to Everyone Here

 

 

 

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

 

I am right at 7 ½ years out of my second rad treatment and I have been using SF 5000 Plus when brushing my teeth. For me it was a life savior because of my jaw problems and not being able to use the tray. I am going to get a tooth removed next month and for me that is a surgery because I can’t open the jaw very wide. Then after that it is ten HBO treatments, so here we go again.

 

Take care

Hondo

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

I've been reading about this on several forums and it appears it affects everyone to some degree down the line. Enough so that it warrants a visit to a dentist that specializes in H&N cancer. There is a dental office at Johns Hopkins specifically geared toward H&N in the Sidney Kimmel Cancer Center. I'm going to arrange an appointment in the not too distant future to get checked out. 

With the price of a crown coming in at roughly $1K per tooth, all I know is I better start saving $$$ now! Thanks for the replies thus far... you guys are great!

"T"

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

has me grateful that I already had dentures when I started treatment.  I'm sure if I'd had teeth at the beginning of treatment, that I too would have been slated for removal before it started....and would have had to spend 6 months without any teeth before dentures could be made.  As it was, the last 3 months of treatment I could only wear them one week out of every three (embarrassing as hell for me, as I'd never gone a full hour in my life without them....and here I was having to face the world everyday toothless). 

I feel for the person who had 15 teeth pulled with no denture to slap into their place....it sounds horrible placing a denture onto newly pulled teeth, but in reality it saves a lot in the pain department. 

p

MarineE5
Posts: 762
Joined: Dec 2005

"T"

I had 30 Rads done by the IMRT over 8 yrs ago. The first 5 years, I saw a Cancer H & N Dentist at the hospital that I had the surgery, along with my local Dentist that also volunteered at the VA. In the first 5 yrs, I used Perio-Check Flouride along with the Trays. I had 2 teeth crack one evening due to me biting into something hard. I had 2 caps put on by the local Dentist.

After my 5 years, I went to the VA Dentist that suggested I used Previ-Dent 5000 Flouride Toothpaste as it wouldn't brown my teeth like the Perio-Check Flouride did. The Previ-Dent has the same Flouride as the Perio-Check and no need for the Trays. Basically the same procedure though. Instead of the trays, brush it on, spit out excess and don't rinse mouth for 30 minutes. I tend to over due things, so I go for an hour if possible and I have zero saliva, so it isn't too hard for me to do this. After that time, I rinse and gargle before sipping water or eating. All this doesn't have to be done at a certain time each day, but should be done at least once a day. Do it around your schedule, and you will stay with the program.

I recently had my teeth cleaned again at the VA and was told that I am doing a great job, so I hope to continue to have good reports. I haven't given up sweets altogether as there are a few things I can taste. Just make it a point to brush shortly afterwards, that is the main thing. My teeth at the beginning of all of this were borderline remove all or keep what I had. I chose to keep them and have been able to so far.

My Best to You and Everyone Here

jim and i's picture
jim and i
Posts: 1683
Joined: May 2011

Do you need a Head and Neck cancer dentist? They pulled Jims back teeth and cut off a bridge before treatment, now his remaining teeth are crumbling. We cannot afford a specialist and probably not a regular dentist. Does Medicare cover the removal of teeth?

 

Debbie

MarineE5
Posts: 762
Joined: Dec 2005

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

jim and i's picture
jim and i
Posts: 1683
Joined: May 2011

Thanks MarineE5 that helped.

wrhbounds's picture
wrhbounds
Posts: 39
Joined: Jan 2013

I have not found anyone who has 10 or more years without teeth and jaw issues. Back then most Drs recommended all teeth be pulled before radiation treatment I did not. My treatment hyperfractionated irradiation at 125 cGy twice a day total 7000 cGy it was brutal. I was able to keep my teeth for 8 years then manderbal started to die 6 years & 17 operations latter all teeth removed then fibula flap then implants & dentures. My how time flies when you are having fun

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

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

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

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"

 

 

MarineE5
Posts: 762
Joined: Dec 2005

"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

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Great info Marine!

Thanks! 

"T"

Sheilarhc's picture
Sheilarhc
Posts: 46
Joined: Jan 2007

Thank you for all that information, I think it's very helpful. First, i'm going to try leaving the toothpaste on my teeth as using the fluoride try's are just too painful.....that's such a great idea. Second, I'm going to talk to my dentist because he has recommended DEEP cleanings and I've had at least one.  Besides my teeth issues I've also had a lot of gum recession and just recently had unsuccessful gum graphing surgery. Now I wonder if the deep clean had anything to do with the graphing failure. 

It's the things that make you go hmmmmmmm

Thank you again.....

ET@cowboy
Posts: 15
Joined: May 2013

Good morning. When this whole thing started my wife's cousin (Dentist) who worked with head and neck folks at the VA in Dallas recommended the following Flouride trays using Topex Take home care gel 4%, NuetralMaxx 5000 plus turbo for once a day. Biotene gel at night. As in your case no one mentioned dental issues. Later when asked,  my RAD Onc mentioned the trays. The old standard was to remove the teeth. Now they try to save your teeth. Unv of Baylor medical in Dallas has a great dental program. I would think JH would as well.

Eric

donfoo's picture
donfoo
Posts: 1327
Joined: Dec 2012

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

MarineE5
Posts: 762
Joined: Dec 2005

Don,

I would think that one of your Doctors would prescribe the higher Flouride for you if they know your history of H & N cancer.

My Best to You and Everyone Here

CajunEagle's picture
CajunEagle
Posts: 363
Joined: Oct 2009

 

Get that Prevident 5000.  There is one for us with dry mouth problems, and my gorgeous, sky blue eyed, blonde Dentist orders it for me and always is sure it's in stock at the office.  I just find it amazing how my medical team takes care of me.  My Dentist even went to the trouble of taking extra classes at the LSU Dental School in New Orleans that deal with H & C patients that she may have to deal with in the future.  For the last four years, I've been her only H & C patient.  I've been in this routine every morning in dealing with Colgate Floride Gel and the trays for 20 minutes....pop in a Salagen....a Gabapentin for Neuropathy....a Prevacid.....3 minutes using the Waterpick water flosser...and then a good 3/4 minute brushing with the Prevident.  With the exception of the Prevacid, I follow this same routine prior to hitting the hay.  Teeth cleaned (no deep) every 3 months....complete exam after cleaning, and xray annually.  There's not much more I can do, except use some Act Floride in the Waterpick.  Only problem I've had is an irritation where my wisdom tooth was yanked prior to rad treatment, so looks like I'm not going to change a thing and continue to knock on wood.

Larry

SASH's picture
SASH
Posts: 284
Joined: Apr 2006

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.

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

Man, a blast from the past....

How's it going bud, long time no hear much... hope all is well and you are doing great...

Nice NASCAR photo on your FB...

JG

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