Actonel, et al not the only dental risk.....radiation is too!!

Cathya · 01-07-2008, 04:10 PM

Following my radiation I had most of my teeth capped as the spray from the radiation blew holes in them. I am also on actonel. For some reason I developed a deep gum problem with one of my back teeth. I have never had a problem before but was told the tooth would have to come out but I should see a specialist because of my actonel treatments. My appointment was today and much to my surprise the doctor said that there is more risk for me from the radiation spray to my jaw (had my supraclavicular node blasted for a tumor) than the actonel. There is no way to tell if there is any damage to my jaw at that point but iff there is and I get an infection following the tooth removal (and I must get the tooth out....no question of it) I could end up the with the need for more surgery and bone removal.....thatistosay the same problem you could have from the actonel. Plus, in his view the odds are greater of this problem and it is every bit as serious. So, if you have had radiation to your neck area......beware. If you going to have radiation.....ask for protection from spray. Just one thing after another....lol.

Cathy

Jean · 01-07-2008, 05:56 PM

Cathy,
Sorry to hear about your issues. I have a close friend who had radiation to the neck area. 20 years ago. She shared with me that back then the radiation was completely different from what treatments are today. Five years after her treatment she had bone loss so great in her jaw that her teeth both upper and lower were just holding in her jaw by a small margin.
She had to have her teeth removed. But the up side to the story is
she has beautiful teeth and has been cancer free all these years.

I am on actonel also.

Wishing you good luck.
Jean

dhealey · 01-07-2008, 06:57 PM

Cathy, sorry to hear of your issues with your teeth. I have not had radiation, but had chemo and was on arimidex and aromasin in the past year. Two of my crowns have fallen out and I have had 3 upper molars fracture. The last one that fractured caused an abcess and the tooth had to be pulled. The dentist told me the problem was coming from the arimidex and aromasion causing bone loss in my jaw. I will be having several teeth pulled in the next few months and then partial dentures. I have decided not to take any more AI's due to all the side effects they were causing me and now this problem with my teeth. I feel your pain!

dchips1 · 01-08-2008, 10:23 PM

I just posted some of the things to watch for , They call it osteonecrosis if it is only from the biophosphanate, osteoradionecrosis if it was from radiation. Please research and look around, right now the best theory is hyperbaric oxygen, and do not let anyone cut the gums, excise bone exposed or not or extract unless it is the last resort. Most of my research has shown the more you mess with it the worse it gets. Peridex mouthwash, closis, tea tree oil mouthwash, and biotene helped my gums some I had huge chunks of flaps of skin, loose teeth and a 1 cm open area. Now teeth have moved, have braces, but jaw has healed from the hyperbaric oxygen. I have 1 small area 1-2 mm exposed healthy bone left my PET/Ct scan lights up on the jaw, the panogram x-rays do not show any bone loss at this time, best kind of x-ray non invasive. Be careful what you eat, even a hard potato chip can damage the gums. I had an old fashioned peridontist try toi excise the gum tissue for me!!!! I said "no thanks" call my onc for antibiotics and never went back email if you need more info
Darita GOOD LUCK!!!!!

Cathya · 01-09-2008, 03:31 AM

Darita;

The dental surgeon I spoke to told me that my risk of osteoradionecrosis was higher in his view than the risk of the other from actonel. He told me that the tooth must come out and it is merely a question of what I am prepared to go through prior to that. I have had two opinions on the tooth removal unfortunately...and it does need to come out...there is an 8 mm pocket which seems to have come up suddenly. He did the x-ray that wraps around the mouth and told me that there is no way he can tell if there is damage to the bone area of the tooth prior to its removal. The radiation was on the other side of the mouth as the clavicular node is on the left side and the tooth is back, bottom right but I did suffer blown teeth on both sides although more on the left. It is so frustrating. He told me that I would get antibiotics following the tooth removal and that I would know within two weeks if there was going to be a problem. Basically it sounds like a crap game.....pull the tooth, hope for the best. He discussed the oxygen chamber but didn't seem too keen. I question that as I have had this little lacunar stroke and don't want to fool around with pressure on my brain....this is just me deciding that intuitively so I could be totally wrong. He also said that there was no way to prepare for the tooth removal in order to reduce the risk. Well....like I said....a crap shoot. I would so appreciate any ideas you might have. Thanks so much.

Cathy

TriciaK · 01-09-2008, 10:07 AM

I am very interested in this thread as I too have a tooth which really needs to be extracted. It is the last tooth on the lower right side---may even be a wisdom tooth as there is no jawbone beyond it. I only had zometa about five times---does it matter how long? I have not had radiation. What kind of a dental specialist should be consulted? My regular dentist won't touch it. What is the hyperbaric treatment and what is it like? I appreciate your info and experiences--as always this site seems to be the best place to get answers! Thank you all so much---Hugs, Tricia

Cathya · 01-09-2008, 11:33 AM

Tricia;

The dental surgeon I saw said that the half life of these biophosponates is very long so I would think you would still have to consider that a risk. However, he did indicate that he felt the risk from radiation was more than from these drugs. He thinks the risk is there but not a large one. Thank goodness you didn't have radiation. Hopefully someone will have more information.

Cathy

dchips1 · 01-09-2008, 11:35 AM

It is interesting how no one seems to know much about the osteo or osteoradionecrosis, (medical people) . The biggest thing was for me to keep caling and asking around town, not alot of docs/dentist have dealt with it. My scrape to the lower inside of my gums progressed (04/07 initial injury) to in 9/07 I had huge peridontal pockets (they say) to where you could just flap back gum tissue off the 2-3 back molars . At first they thought it was an abcess, because it was a white pimple area, no pus would come out then the white would go away and the gum could be flapped away. I did have a lot of pain under my jaw and you could feel a lump under my jaw and they would put me on antibiotics to calm down the outside. The hyperbaric oxygen was done at a hospital they have 2 chambers which are individual chambers. this allows for customizing and I like better then a group chamber, I did 20 "dives" slept most of the time or watched movies, within the first 2 weeks my mouth started to heal, this 5months since it started, I had tried almost anything and now I have had even another root canal then 10 more dives, my teeth cleaned and not alot of pain except for my TMJ joints, because my teeth have all shifted, and I clinch them at night. I was told if anymore dental procedures then you do 10 follow up dives. They have seen people with extractions heal up after O2 dives. As far as the stroke hx the medically eval you before you go in, they actually reccomend it post WBR rads and also use for Cerebral palsy. I went to Chandler Regional Medical center in Chandler, Az the tech there is DAN he was a "jaw" saver, he answered all my questions and reffered me to web sites, because everyone I talked too hadn't really messed with hyberbarics, nor thought it would help, but I pursued it and the insurance company paid for it because of the "radio" radiation component of the osteonecrosis. Medicare will pay for it with radiation hx. Sorry so long and scattered but ask anything if I have forgotten . Darita

dchips1 · 01-09-2008, 11:42 AM

MRI, and panogramic x-rays did not show anything when my jaw was at it's worst. They say there is not a definitive test to dx this, but it is more based on symptoms and the bone exposing itself and dying. Interestingly my last 3 PET/CT scans showed NED in body but blew pretty high uptake in the jaw everytime. HMMMM you can googlepictures of osteonecrosis some are pretty gruesome. I will try to find the web sites of hyperbarics and osteo

Cathya · 01-09-2008, 11:46 AM

Darita;

Would you suggest that I set up this oxygen chamber as a preventative messure or wait and use it only if I had problems?

Cathy

dchips1 · 01-09-2008, 11:57 AM

Cathy, it is as you called it a crap shoot, the tech that I worked with have seen alot of people do good with pre/post treatment dives. I swear by it. Because of how bad mine had got, yeah I had two root canals since radiation but my teeth are in my head, and my clear braces anre cool!! (says my 7 year old) I would cry all the time thinking I was going to loose my teeth and jaw, I still worry now but not as much because I do not have the big open deep pockets. So if I was in your shoes I would talk to your local center. Chambers are located all over the place, and getting your ins to pay can be tricky but call a wound center near you and see who has a chameber and ask them to help you thru the Insurance auth mess.

dchips1 · 01-09-2008, 12:20 PM

In most single chambers you do not have to wear the hood!!!!
http://www.nhshealthquality.org/nhsq...T_Revision.pdf

http://www.nationalhealing.com/downl...EOwinter05.pdf
http://www.jenkshbot.com/Default.aspx?tabid=88

http://content.karger.com/produktedb...file=000097876 The discontinuation of bisphosphonate therapy has not helped reverse the presence of osteonecrosis, and the surgical manipulation of the involved site appears to worsen the underlying bone pathology but I disagree with the O2 tx not helping

http://www.drlogueoralsurgery.com/fo...antBISPHOS.pdf

good overall info but like I said HBO 02 helped me, there has not been any good studies that are recent hope this helps Darita (keep me posted as what you decide and how you r doing)

Cathya · 01-09-2008, 01:51 PM

Darita;

I have called the dentist office and told them that I would like to proceed with this oxygen therapy and the assistant said she would begin the process with the surgeon. It is available in the hospital (which I am very familiar with....lol) so I'll just wait now to get more details. I'll keep you informed about how things go. I am so grateful for all of your help. It really is a depressing situation to be in.....and scarey!! You have really helped ease this.

Cathy

dchips1 · 01-09-2008, 07:54 PM

Cathy,
I got my HBO dives(like the lingo haha) although it sounds like a bad cable movie!!LOL

I got my dives covered under medical and appealed to my dentist/oral surgeon for letters that I sent to health insurance to prove medical neccesity and my medical insurance is even paying for dental panograms, and hopefully some costs relating to my braces, because our dental covers only 2000$ of the 4500 braces!!!
You go Girl!!! Love and Prayers Darita

Cathya · 02-13-2008, 07:51 AM

Darita et al;

Just had my tooth removed this week. So far so good. I got the impression that the tooth was difficult to remove but the doctor told me that he was just being careful. I go back to see him in four months. I am on antibiotics and am just being careful what I eat. I rinse my mouth with an antibacterial wash that I happened to have. I wonder how long it takes to be sure there is no problem. He seems to think it'll be a long time which is why the four month period until I see him again. He was not in favour of the hyperbaric chamber prior to the operation and I didn't push it.

Cathy

~Bellydancer~ · 02-13-2008, 08:21 AM

For your rinsing I would suggest warm salt water. It really is the best for soothing and enabling the healing process.
As for the other's, some of the comments about the periodontal pocket's make me feel that you don't trust your DDS. I would be seeing a Periodontist if you are having gum issues. I am a Dental Hygienist and I know myself both personally and professionally about mouth and gingiva issues. I am not up on the HyperBaric stuff and will have to read more data. Pockets can "suddenly" appear. At home we are not measuring our pockets daily or monthly. All it takes is bacteria to "punch thru" the connective fibres that hold the tissue tightly around the tooth and create a deeper pocket. There is often no pain or swelling associated with this.
We can brush and floss and rinse but if the bacteria finds a weak spot they will undermine it until they create the niche. These spots that pulled away are along the cheek or tongue side of the teeth? There really isn't anything that you can do to prevent that barring the regular proper homecare. FYI Flossing is only good to a depth of 3-4 mm in between the teeth. Make sure that you are using a soft or extra soft toothbrush, changing it often and using a good toothpaste. I prefere a natural toothpaste with tea tree oil and baking soda.

Cathya · 02-13-2008, 09:31 AM

Michelle;

Thanks so much for your reply. I had not been having these problems in the past (pre cancer) but a deep pocket did suddenly appear that caused the removal of this tooth. This is what I was told. When the tooth was taken out the dental surgeon told me that it was broken in two (the root) and infected with a cyst as well. He said it definitely needed to come out. So....was that the cause? I wonder. My own dentist checks my gums each time I am there. I use one of those electric toothbrushes but will get some better toothpaste and use the warm, salted water. I really do worry about my teeth....what if this is just the start??

Cathy

~Bellydancer~ · 02-13-2008, 10:27 AM

Teeth are funny. From what you say, there could have been a crack in the tooth for a long time. Sometime teeth will "die" quietly, no sensitivity to temp, bite or sweet. If this tooth was cracked and the nerve died, our body will try to take care of the debris....dead nervous tissue, thus the cyst. The body encapsulates the debris and tries to protect it from contaminating the rest of the body. Cracks don't always show up on an x-ray,teeth are 3D and the xray is only 2D. I can see a pocket "appearing" all of a sudden with what you are explaining. This unfortunately is an unperdictable event. I am not familliar with your Meds...I haven't been Rx them and don't know about the s/e. Does it deplete the Calcium? Can you take Ca? Can you have a topical Fluoride? Fluoride helps to remineralize the weakened enamel, it won't however heal a crack. Oral b make a daily or a weekly rinse. I have limited US product knowledge as I can't get the stuff 'cuz I live in Canada. So there many be others available. You can also get a brush on type of fluoride such as Gelkam or Biotene makes a higher concentration type of Fluoride toothpaste. This is good for areas of erosion due to radiation, high levels of stomach acid due to vomitting, dry mouth and acidic foods. I would have a frank discussion with your Hygienist and or Dentist. It depends upon who is more intune with the now. Have them make suggestions to help prevent further tooth loss.

Cathya · 02-13-2008, 12:19 PM

Michelle;

I am going to the drug store right now to look for the products ... toothpaste, Fluoride. I lived in Winnipeg for twenty some years...attended the U of Manitoba and just stayed. I now live in a small town one hour south of Ottawa along the St. Lawrence. I hear you're getting pretty grim weather out there ....lol. I do remember it well but I loved Winnipeg and had some wonderful friends there.

Cathy

~Bellydancer~ · 02-13-2008, 12:29 PM

I didn't even look to see where you are from. Sorry. I have found that my tea tree oil tooth paste is really helping me with the mouth sores and my tissue is still in pretty good shape. You may have to go to a Healthfood store to get tea tree oil toothpaste. I get mine from the states. Cantact if you want info, there is a whole line of products. Lablaws I tink my have it at a Superstore type of place. Try to stay away from any of the "extreme, whitening, polishing" type toothpaste as they are all very harsh and not at all good for long term use. That is why I use baking soda. Non abrasive, excellent for removing tea stains,and helps soothe the tissue

. Let me know if you need any more from the "toothfaerie".

I noticed you had Taxol....how did it go for you? What did they give you as a pre med? I had such an awful time with Taxotere that I has said stop until I can regroup and refocus.