Jaw Bone Problems

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Jaw Bone Problems

by Velvetjb on Fri Jan 20, 2006 12:00 AM

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Has anyone had any jaw bone problems with bisphosphonates? Apparently some bisphosphonates can cause jaw bone necrosis. I can't find any information on how this now recognised adverse event begins. Yes, info on necrosis but not early symptoms. I have had bisphosphonate treatment for about 5 years. I have breast cancer mets to the bones. I have a piece of exposed jaw bone in my mouth on the lower jaw/gum. I haven't had teeth there for many years. It started about a year ago with a swelling and tendeness and progressed to a small abcess. A week or two after a piece of bone appeared and has progressively got bigger in height, length and width, now occupying the space of 3 double teeth and half as high. I have a dragging sensation, faint, dull ache, the gum gets sore and the side of my face is slightly swollen. My dental surgeon has no idea, her colleagues had a look and have never seen anything like it. My oncologist asked me to have an OPG X ray and said there was no evidence of necrosis (nor cancer according to the bone scan) but isn't happy that it is there and to see the maxillo-facial surgeon end Jan 06. If anyone has any experience of this kind of problem please reply, thank you, Velvet

Jaw Problems

by Oncrx on Mon Jan 23, 2006 12:00 AM

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Yes, this does happen with biphosphonates. Here is some more information. Fosamax ( generic name - Alendronate ) and Zometa are types of drugs known as bisphosphonates. Recently a link has been found between bisphosphonates and a serious bone disease called osteonecrosis of the jaw ( ONJ ). This important discovery clearly shows that Fosamax side effects may include osteonecrosis of the jaw. The discovery, published in the Journal of Oral and Maxillofacial Surgeons, prompted both the US, Food and Drug Administration ( FDA ) and Novartis, the manufacturer of bisphosphonates used in cancer chemotherapy, to issue a warning to health care professionals on September 24, 2004. The warning letter contained information about bisphosphonates and the risks of osteonecrosis in the jaw. Bisphosphonates are commonly used in tablet form such as Fosamax ( Alendronate Sodium ) to prevent and treat osteoporosis in post-menopausal women. Stronger forms of bisphosphonates are commonly used in the management of advanced cancers that have metastasized to the bone, where the disease often causes bone pain and possibly even fractures. Several cancers can involve or metastasize to the bone, including lung cancer, breast cancer, prostate cancer, multiple myeloma, and others. When bisphosphonates are given in cancer chemotherapy, the drugs are given intravenously, and usually for longer periods of time.

Jaw Bone Problems

by Velvetjb on Mon Jan 23, 2006 12:00 AM

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Thank you, Michael R for the info, reference my message number 1. Is this the way osteonecrosis begins? How does it progress? And what is done to remedy it? Can it be remedied? Thank you Velvet

Jaw

by Oncrx on Wed Jan 25, 2006 12:00 AM

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Keep in mind, I am NOT saying you have ONJ, I am just saying biphosphonates can cause it. Your doc should be able to diagnose this. The best treatment is to get off the biphosphonate.

Jaw Bone Problems

by Velvetjb on Wed Jan 25, 2006 12:00 AM

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Dear oncrx, Thanks for the info. I had read about jawbone problems and bisphosphonates but still can't find any info on how it begins, if what I am experiencing is the typical pattern. Today I have seen the maxillo-facial surgeon and he has seen two other patients with similar jawbone extrusion but mine is the worse. So he says he may be learning from me ~ which really doesn't help! He doesn't know how it will progress except he read about a case inwhich the bone sheared off, bled for a while (didn't say how long a 'while' was) and self healed. For the moment I am to be closely monitored, he suspects it is due to the bisphosphonates as so many are now reporting this condition, especially in USA. He is well versed in a similar ocurrence due to radiotherapy and at the moment is calling my problem osteosclerosis. The surgeon and my oncologist are to have a chat but I have told him I am reluctant to give up the bisphosphonate because it has kept blood calcium within normal levels and the mets stable. I have 18 sites in the , femur, pelvis, sternum, ribs and spine which have been stable for 3 years. I told him I thought I would be foolish to just opt out of a treatment at this point (give up the bisphosphonates)and he agreed. Even though I have a sharp edge on the bone the surgeon says put up with it if I possibly can as any interference always makes it worse. I think anyone interested in this article will just have to watch this space for updates ~ I will send a message with more news soon, Be safe, Velvet

Bisphosphonates and Jaw Necrosis

by Loree on Wed Jan 25, 2006 12:00 AM

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Velvet, Just a heads up. I had been on bisphosphonates for over 2 years when I noticed an increase in sensitivity to hot/cold, and other sensations on one side of my mouth. I told my oncologist and he immediately stopped treatment until I folowed up with a periodontist. They did find an area where the gums were receding from the teeth, but not severe (at this time). My oncologist has resumed treatment however only on every other month -- I had been treated every 28 days. There is a class action lawsuit organizing re necrosis. You can search the web for bisphosphonates and side effects and you should pull up the info. Good luck. LAS PS. There had been a study a year plus back that indicated that the bisphosponates just might keep the cancer from returning to the bones. I'm living proof that they were totally wrong on that score! It returned with a vengence after a 1 yr. remission.

Onj: Osteonecrosis of The Jaw / Bisphosphonates

by edgerider on Tue Jan 31, 2006 12:00 AM

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I am a medical researcher specializing in women's health, focusing on breast cancer, and the compiler and author of the widely-cited EBM (evidence-based medicine) site Breast Cancer Watch (http://breastcancer.evidencewatch.com), whose original content I author, and which publishes evidence-based systematic reviews and critical appraisals of the latest breast cancer treatment research findings, providing up-to-date evidence-based breast cancer guidance for use by co-researchers and clinical oncologists at many leading cancer centers. As part of a recently completed evidence-based systematic review of the latest breast cancer treatment research findings, both for Breast Cancer Watch and for my sister site, Osteoporosis Watch, I addressed extensively the issue of ONJ (Osteonecrosis of the Jaw); unfortunately although some the recommendations I have published are to be incorporated into pending evidence-based guidelines, this final form of the guidance is not yet available. However, much of the information I have provided exists in two online-accessible forms: (1) an extensive patient-orientation discussion thread in which I participated on the Breastcancer.org forum; link at: http://www.breastcancer.org/ubbthreads/showflat.php?Cat=0&Board=UBB7&Number=236454&Searchpage=1&Main=228435&Words=osteonecrosis&topic=&Search=true#Post236454 (2) a technical discussion for health and oncology professionals on my Breast Cancer Watch site, at: http://breastcancer.evidencewatch.com (select "treating Side Effects" on the blue navigation bar, then select "Jaw Osteonecrosis and Bisphosphonates"). After reviewing either or both of these sources, if I can assist and answer any questions or concerns remaining, please let me know. Constantine Kaniklidis Medical Researcher in EBM (Evidence-based Medicine)

Onj: Osteonecrosis of The Jaw / Bisphosphonates

by Velvetjb on Wed Sep 20, 2006 12:00 AM

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Hello anyone out there with ONJ. It is 9 months since I first wrote about ONJ asking questions about how it progresses and whilst I have read a whole lot on the lawsuits and the correllation between bisphosphonates and ONJ I still can't find any case studies or hear from others with the same condition. So here I am reporting back on how I have been getting on. My jawbone continues to extrude through my gum (where back teeth had been removed from my lower left side some years before) It has got taller and longer and two holes have appeared. Inside the holes is soft squidgy tissue that bleeds quite often but oddly enough always feels better after a bleed. The holes have been the biggest problem as food debris gets into the holes and I have had several infections. I had pain from my temple to my collar bone, so much swelling in the gland beneath my jaw and in the back of my tongue that I didn't dare sleep through the night incase I asphyxiated and spent 4 days drinking through a straw, unable to chew or swallow solid food. I was in all consuming pain and had high doses of Metronidazole. I have some pain 24/7 but when it becomes infected it is incredibly painful. I keep records of any hospital/family doctor visit; what I asked , what was said, what was given etc. and I record too any problems or changes so have got some interesting news on the ONJ. What I noticed was about 10-12 days after my Zometa IV I had a growth spurt on the jawbone and extra pain too. I have stopped the Zometa (6 weeks now) and have had no growth spurt this month. I also know when an infection is beginning. Twice now the first sympton is a smell (rather than a taste) I wake up in the morning and the room seems to be filled with something like a sour/biscuit odour and within 24 hours I am in excrutiating pain, the gum deep red and swollen around the bone and the taste in my mouth is disgusting (just like a camel's). I told my family doctor this but he seemed doubtful, but I can only go on what I have observed. My Oral Max Fax surgeon has now seen 11 patients and still says I am the worst of all. I still rinse several times daily with hot salty water, I know it's not always possible to keep it up regularly but carry a little bottle of salt with me and an old aerosol lid for a cup so I can keep up the rinses when I am out. My Oral MF says salt is as good as anything, the mouthwashes made my gums sore and my teeth pink, (very pretty but not for teeth!) I am now considering something called debridement, where the surface dead bone is removed as the holes, one at each end lead to a cavity beneath the 'lid' of bone and food debris collects and I can't remove it but if and when the 'lid' is removed I am concerned about the exposed soft tissue beneath. I am also thinking of having a gum shield made so I don't hit the soft tissue with anything I eat yet can remove it to clean. I will feedback here any decisions I make. I think one of the things that concerns me most about ONJ is the drug companies' lack of response in advising patients as to how it progresses, the best course of management, yes, lots of advice on prevention but it seems once you have it you are left to get on with it. I feel incredibly angry and I am really fed up with, 'well we just don't know!' 'we will monitor!' 'it is a rare complication!' responses, it simply isn't good enough; drug companies out there ~ are you listening? Rare? Are the drug companies sure about this? And what does 'rare' mean to someone who is up all night crying with the pain, pain on top of their original bone disease. In the UK we seem to have less reported cases, this is probably due to the fact that the USA got licenced for bisphosphonates earlier than UK so our problems are just emerging. And as prescribing HRT has been reduced for osteoporosis (partly because women are more informed nowadays) and bisphosphonates have taken their place, I foresee this present 'tip of the iceberg' exploding in the coming years. I will post back here with any other information or just to have a moan, in the meantime stay well, Velvetjb

RE: Onj: Osteonecrosis of The Jaw / Bisphosphonates

by Ogburg on Fri Jan 05, 2007 12:00 AM

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Hi,

 I am fairly new to message boards and very new to this jaw bone problem. About 2 months ago I had some swelling on my bottom jaw, which I assumed was pieces of an old tooth that was extracted 35 years ago. I did a little self help and pulled a few pieces out. As time went on the exposed bone (which I thought was tooth fragments) kept getting larger. Yesterday I went to the dentist and was informed that it was bone. He ground down the bone so it was below the skin surface and said it should heal. Time will tell. The difference with me in this case is:

I have never been diagnosed with cancer and I have never taken any Bisphosphonates. It seems like any research I do, includes these two facts.

However I am a 54 year old male and a 100% disabled veteran with type 2 Diabetes, Fibro Myalgia and Peripheral Neuroapthy, (please excuse spelling errors) and take various drugs for these conditions, but nothing in common with other people with the exposed jaw bone condition. My dentist has no clue to why this is happening.  

Thought this might be of interest to you.

Regards

Randy L.

--- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----

RE: Onj: Osteonecrosis of The Jaw / Bisphosphonates

by Velvetjb on Fri Mar 23, 2007 12:00 AM

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Hello.

Thank you for your post which I have only just seen. Yours is a very interesting case. Did your dentist describe your condition as osteonecrosis and have you had any follow up Xrays or scans to see how the rest of your jawbone is reacting?

I only hope you do not have ONJ as it is quite a nasty condition. Has anyone explained to you why this might be happening?

Has anyone else looked at your jawbone?

I hope the bits of bone that came thorugh have disappeared and all is well for you now, thanks again for responding to my post.

 Velvet (UK)

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