Osteonecrosis Of The Jaw

Hi Everyone~~ As many of you may have read on other messages, I have now been diagnosed with osteonecrosis of the jaw and the first recommendation was that I immediately stop taking Aridia/Zometa the bone strengthening drugs.  As it happens, I stopped having them over 12 months ago because I had heard of this condition and was afraid it might happen to me.  I wonder, did I make it happen by worrying about it??  Gosh, I hope not!!  Anyhow, my reason for this message is this:  How many of the MM patients using this message board have had this condition happen to them?  I am told that there is no treatment for the situation, and that I am to avoid any tooth extractions or root canal work on any of my remaining teeth.  If there is anyone else who has had to deal with osteonecrosis of the jaw I'd appreciate sharing experiences to know how you managed and what happened. I look forward to hearing from you.  Many thanks, Cath

 

On 2/6/2008 poppy/cath wrote:

Hi Everyone~~ As many of you may have read on other messages, I have now been diagnosed with osteonecrosis of the jaw and the first recommendation was that I immediately stop taking Aridia/Zometa the bone strengthening drugs.  As it happens, I stopped having them over 12 months ago because I had heard of this condition and was afraid it might happen to me.  I wonder, did I make it happen by worrying about it??  Gosh, I hope not!!  Anyhow, my reason for this message is this:  How many of the MM patients using this message board have had this condition happen to them?  I am told that there is no treatment for the situation, and that I am to avoid any tooth extractions or root canal work on any of my remaining teeth.  If there is anyone else who has had to deal with osteonecrosis of the jaw I'd appreciate sharing experiences to know how you managed and what happened. I look forward to hearing from you.  Many thanks, Cath

My husband (who is 75) also has multiple myeloma and developed osteonecrosis of the jaw following treatment with zometa.  This occurred followed extraction of a molar which allowed an unexposed wisdom tooth to emerge.  He was seeing one oral surgeon who finally threw up his hands (literally) and said, "I don't know what else to do."  So I found another oral surgeon fresh out of med school who said, "Oh, I've treated this before."  So he got him into an oxygen compression chamber therapy regimen.  He went to our local hospital 5 days weekly for 6 weeks.  Then the surgeon performed surgery where he opened up the gum, scraped out the dead bone and closed the gum.  Prior to that, my husband was constantly having gum infections, that "rotten tooth taste" in his mouth, bad breath, inability to eat, etc.  Following the surgery, he had 2 more weeks of the oxygen therapy.  The effects have lasted over a year.  He is getting to the point now that he will probably need another surgery very soon.  He uses an antibacterial mouthwash 3 times daily - chlorhexidine gluconate (prescription).  Hopefully this will help your condition. 

Hi Nelle -- This sounds really promising, but unfortunately  I live in a rural town in Australia and I don't believe we have an oxygen chamber.  I might be able to do this treatment in Melbourne, but I'd need to find somewhere to stay as driving time is 2 hours each way.  Still, if it gets worse, that may be the only answer.  I have been told that osteonecrosis as a result of the Aridia/Zometa is relatively rare, and the response rate to this message would seem to confirm that so perhaps this may be the only treatment.  After all, a year without symptoms is a very worthwhile outcome!  Thanks so much for your response.  I see my dentist next Weds. and my oncologist on the 28th so I will follow up your suggestions with both of them.  Your help is greatly appreciated.  Cath

I don't think this is as rare as you might think. I believe there are class action law suits in the works against the drug companies- do your research. I  am not a a lawyer incidently. Good luck; get a 2nd opinion(somebody that has has had experience with the problem) before you let somebody do something to you as you don't want to  make it worse

In the U.S., we repeatedly see t.v. ads stating that there are lawsuits regarding Osteonecrosis of the jaw from drugs such as Fosamax, Aredia, etc.  So, it is not uncommon.  There must be a safer treatment for the bones.

What I don't understand is how can doctors still be prescribing Aridia if 'class actions' are pending because of osteonecrosis. If public advertisements are being played on mass media in the US, then WHY can this still be happening in Australia??  I haven't seen any articles in respected journals from the International Myeloma Foundation or from CTCA on this subject.  How can this be?  Why isn't the 'world' being told of this???  Its all very puzzling!!  Cath

 

On 2/9/2008 poppy/cath wrote:

What I don't understand is how can doctors still be prescribing Aridia if 'class actions' are pending because of osteonecrosis. If public advertisements are being played on mass media in the US, then WHY can this still be happening in Australia??  I haven't seen any articles in respected journals from the International Myeloma Foundation or from CTCA on this subject.  How can this be?  Why isn't the 'world' being told of this???  Its all very puzzling!!  Cath

I think that often the doctors are not fully aware of side effects - only that a drug is supposed to take care of a medical issue.  Pharmacists and nurses seem much more in tune with the overall picture of a drug and its effects both bad and good.  I do my research on every drug that my husband takes (as I did with my own when I was going through breast cancer treatment 11 years ago).  I saw that osteonecrosis was a possibility but I felt the good outweighed the risks.  I know people who have been on Zometa or other like drugs for years with no adverse side effects.  I think that all patients, no matter what their illness, need to be very proactive in their treatments, ask lots of questions, and do their own research.  I used to think that doctors knew everything!!  Not any more.  I love out oncologist but I also dig to find out the things that I have questions about. 

 

On 2/9/2008 Nelle wrote:

 

On 2/9/2008 poppy/cath wrote:

What I don't understand is how can doctors still be prescribing Aridia if 'class actions' are pending because of osteonecrosis. If public advertisements are being played on mass media in the US, then WHY can this still be happening in Australia??  I haven't seen any articles in respected journals from the International Myeloma Foundation or from CTCA on this subject.  How can this be?  Why isn't the 'world' being told of this???  Its all very puzzling!!  Cath

I think that often the doctors are not fully aware of side effects - only that a drug is supposed to take care of a medical issue.  Pharmacists and nurses seem much more in tune with the overall picture of a drug and its effects both bad and good.  I do my research on every drug that my husband takes (as I did with my own when I was going through breast cancer treatment 11 years ago).  I saw that osteonecrosis was a possibility but I felt the good outweighed the risks.  I know people who have been on Zometa or other like drugs for years with no adverse side effects.  I think that all patients, no matter what their illness, need to be very proactive in their treatments, ask lots of questions, and do their own research.  I used to think that doctors knew everything!!  Not any more.  I love out oncologist but I also dig to find out the things that I have questions about. 

 

 

I am on Arimidex for Breast Cancer.  It leaches calcium from the bones.  As a result, I take Boniva to prevent osteoporosis.  I have a tooth with the root uncovered due to a wisdom tooth being removed over 30 years ago.  The dentist is sending me to an endodontist to see if we can save the tooth because of the high danger of osteonecrosis if it is removed.  What a mess!!  There must be many others out there with the same difficulty.

Good Thinking Nelle!!  I wish that I had done more research when all of this first started, but like most people who recieve a diagnosis of 'cancer' I tended to panic and went with the first things that doctors recommended.  Fortunately my doctors are FANTASTIC, but I would have avoided a lot of trauma and drama had I taken time to read this site before starting anything.  We are always smarter in retrospect aren't we??!!  Oh well, I have learned my lessons and like you, I certainly counsel people to take a bit of time to do some research BEFORE starting any treatment.  Maybe that's why I'm still here!!  I've had just about every side effect and negative thing happen during this journey, and we have learned heaps which seems to be assisting others going through the same problems.  Speaking with others who have undergone the same thing is much more powerful that talking to people who have 'read' about things or just 'heard' about them.  I have survived almost 5 years with three very near death experiences from which I have pulled through -- giving the scientists time to develop these new drugs which are currently holding my paraproteins at bay!!  Hopefully this will continue for a lot longer, until something even better comes along!!  Rest assured that I will read all of the fine print and research completely before going on to the next thing!!  Thanks for your wise words, Cath

There is lots of info out there about this issue. I stopped Aredia over two years ago as it had been reported that it could cause ONJ. I think the maximum time that an MM patient should be getting these drugs is 2 years and should be discontinued unless there is some further benefit that would outweigh the risk.