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CancerLynx - we prowl the net
February 27, 2006

Jawbone Problems And Bisphosphonates

I was diagnosed with breast cancer metastases in 2001 after left breast cancer in 1996.

My blood calcium levels were high so I was put on IV Pamidronate and then changed to IV Zometa, so after 5 years except for a brief interval when I was on oral Ibandronate which made me incredibly sick and my stomach very sore indeed. I have had treatment every 4 weeks but the pain levels have been very good and the bones are strong.

I believe certain drug companies have identified a problem with bisphosphonate use and jawbone osteonecrosis for over a year now though I had never been told about it at the hospital, before or during treatment. And if I didn't have the Internet I probably wouldn't know about it now.

I have a piece of jawbone sticking through my gum and have searched the Net for early symptoms but there is very little information, (except for the odd article I have written), but lots of information on bisphosphonates and telling you this can happen and of course getting compensation with offers of lawyers (solicitors, here in UK) offering to take up the case for you.

I am not writing here to advise you on any legal aspect. My stance is that had I known about this jawbone problem I probably would have had bisphosphonates anyway and will continue to have it if my oncologist and the maxillo-facial surgeon think it is appropriate. However, I should have been told not to have any major dental work carried out. When I think back over the 5 years of all the knocks, trips, slips and several falls I have had in that time and how the pure strength in my bones has prevented me from ever having any breaks/fractures, I am indeed grateful that I was advised to have the drug. A broken hip at my age (late 50s) and after being on anti-hormone treatment could have cost me dearly in pain, emotions, surgery (if it had gone well ~ never mind if it hadn't) my job, time, etc. So I am pleased I have strong bones.

My jawbone problem began about a year ago. I had lost most of my molars (double teeth) in the bottom (and some of my teeth had crumbled and broken off after having twins, now 32 years ago and not taking any calcium because I didn't know I was having twins ‘til two weeks before they were born) so my teeth were pretty poor and I have had a lot of dental work over the years.

About 2 years ago I had my gum opened up and had a part of a tooth root removed after a tooth extractions some years before. This had partially worked through the gum for a long time and was rough and irritated, and seemed to catch the edge of my tongue making it constantly sore. That mini op healed very well and I had no more problems.

About a year ago I noticed my gum was sore, red, tender and swollen over an area of about 1.5cm (sorry, UK is all metric now ~ how annoying! (Slightly more than 5/8 of an inch) and I asked my dental surgeon to have a look at it. She told me it was an abscess, drained it and I had a course of antibiotics. Over the next few months I had constant abscesses and noticed the gum had become wider and the area at the very bottom of the cheek before the gum begins, the very lowest point, was deep red, swollen and tender and my face over the area was faintly swollen and has swelled a great deal more since. My dental surgeon has been looking after me very well and now keeps regular checks on it.

One day I noticed something sharp sticking through the gum and a piece of what I thought then to be tooth root coming through. I felt quite angry with this because not so long before I had had a piece of root removed. This sharp piece continued to grow and the abscesses also continued but I have to say that now that there is really quite a chunk of bone through the gum I don't get the abscesses.

The feelings I get from this is, (apart from the soreness inside) is a faint ache, more of a dragging sensation but I don't bother to take any pain meds ~it's not that bad, but it is constant. I always have to remember not to chew on that side and I am extra careful with the toothbrush. I have permanent slight swelling and tenderness of the gland beneath my jawbone and my cheek is very slightly swollen too.

The area now occupies slightly more than the space of two molars, the gum is quite easily double the width of the other side (also lost three back teeth) and the height of the bone sticking through the gum, although it is rough and varies, at it's highest is no more than 3mm high. It appears to be growing still. There is a very sharp side edge to it and I had intended to have this drilled smoothly if my dental surgeon would do it but is currently awaiting advice from the hospital.

So far, this article has been about me giving the history of the problem and one piece of advice here is to keep a record of any changes, whatever and wherever they are. I keep a folder on my computer with details of everything I ask, everything I am told at the hospital, and everything I notice. I keep records of all dates of scans separately, keep scan reports/correspondence and everything related to my health in folders as well as anything of particular interest about health matters I get from the Net or other sources. (I don't keep a diary however, about how I feel, pain or emotions. I think that simply adds to the stress levels and I believe, read about an invalid and you can become one and end up self-pitying ~not a good place to be.)

I had a bone scan only 4 weeks ago and nothing of note was said about my jawbone. I also had an OPG (orthopantomogram) X-ray. This is where you stand and put your head in a circular cage type machine and the X-ray is taken as it revolves around your lower face showing the upper and lower teeth and some skull bones, the result being a flat ordinary X-ray film. This also failed to give much information except it showed some lucency of the bone in the area affected. Lucency means transparency, so I believe. So I guess this means less dense.

The oncologist suggested I see the maxillo-facial surgeon as he has little, if any experience of osteonecrosis (osteo, means bone, necrosis means death) neither has he experience of the symptoms in the beginning. I actually believe this is somewhat uncharted territory at the moment as it is quite a recent adverse event (side effect) and it seems very few really informative articles have been written on how this problem emerges. I have written to the drug company but alas, no response to date.

And as to how to resolve this problem, no one seems to know! I for one do not want facial/jawbone surgery. But my options may dictate otherwise. My experiences so far and understanding of the problems are written below.

Early symptoms
Begins with swelling and tenderness over an area of gum.
Repeated abscesses formed.
Slight ache in area
Gum splits and what appears to be a tooth but is actually bone begins to erupt from the gum.
The bone continues to grow through the gum.
The gland beneath the jawbone may or may not swell.
Bone can come through alongside other teeth and this will ultimately displace them. I have no information to guide you with this problem. My experience is purely from having bone extrude through the gum from a space where teeth had been extracted.

Time scale
From the time I first noticed a tender gum area to the bone breaking through the gum was about three months.
Based on my own experience I guess the growth rate of the bone is something like 1 mm (about the thickness of a thumb nail) every three to four months.

Out of several million bisphosphonate users there appears to be less than a thousand cases reported worldwide. Not all cases of osteonecrosis of the jawbone have arisen after dental treatment. Some cases have arisen spontaneously.

Likely Investigations
Consultation with your dental surgeon.
Bone scan, OPG X-ray and/or MRI
Consultation with maxillo-facial surgeon and oncologist

Appears to affect mostly the lower jaw but upper jaw problems have been noted.

Managing the problem
Gentle tooth brushing of affected area ~remove food debris carefully. A child's toothbrush is softer.
Use alcohol free mouthwash.
Rinse with salt water if you have abscesses and get some antibiotics. Complete the course and go back if the treatment hasn't been effective.
Do not have any biopsies of the bone, all data so far suggests ~ you leave well alone.
The less you disturb the bone the more likely you will remain infection free.
Try to chew away from the affected area.
Be careful flossing and when using tooth picks.
Do not disturb gum or bone.

Keep a record of dates and appearance.
Look for abscesses.
Get antibiotics treatment if required.
Look for changes in bone colour. This may indicate a change in the condition.
Make a note of different tastes or bad breath as this may indicate infection.
Check gum surrounding the bone and other gum areas daily.
Make notes about changes in pain level and seek urgent medical advice if pain increase substantially.

Have a dental check and any procedures carried out before beginning bisphosphonate treatment. Make sure the procedures are well healed before beginning treatment.
Do not have any major dental work performed during bisphosphonate treatment. This is a hard one if a tooth needs to be extracted. Consult oncologist/maxillo-facial surgeon beforehand if you need tooth/teeth extracted.
Major procedures include tooth/teeth extracted, roots removed and canal treatment/s and includes any procedure where the gum is opened.

Considering changes in treatment
Some are advocating stopping bisphosphonate treatment immediately.
This has to be very carefully considered because there is evidence that bisphosphonates help to prevent skeletal events, (fractures)
You also have to consider high blood calcium levels and the serious problems associated with this.
I understand oral and IV bisphosphonate treatment can cause jawbone problems of this nature.

My maxillo facial surgeon has heard of a case where the bone sheered off, bled for a while and completely self- resolved.
I have read a report stating that the area of jawbone had been surgically removed.
Whilst the two above are extremes/rare I can find no general information as to how the majority are affected. I would love to read that generally the bone has grown through the gum and just remains there. Alas, I cannot find this information anywhere ~unless you tell me something I don't know.

Be safe, be well, be happy,

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