CancerCompass message board discussion started by poppy/cath on 2/6/2008 http://www.cancercompass.com/message-board/message/all,20676,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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 poppy/cath Wed, 06 Feb 2008 00:00:00 GMT  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, CathMy 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.  Nelle Thu, 07 Feb 2008 00:00:00 GMT 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 poppy/cath Thu, 07 Feb 2008 00:00:00 GMT 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 needhelp Fri, 08 Feb 2008 00:00:00 GMT 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. roadrunner Fri, 08 Feb 2008 00:00:00 GMT 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 poppy/cath Sat, 09 Feb 2008 00:00:00 GMT  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!!  CathI 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.  Nelle Sat, 09 Feb 2008 00:00:00 GMT  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!!  CathI 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. rscuerabbit Sat, 09 Feb 2008 00:00:00 GMT 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 poppy/cath Sun, 10 Feb 2008 00:00:00 GMT 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. Chapbin Mon, 11 Feb 2008 00:00:00 GMT Radiation froze my jaw and I was only able to open it a little.  3 yrs. later the one side is working itself loose. We are military and every drug given to me in Oncology and at the Pharmacy gives out 2-3 pages of what the drug is, what it is to do, Etc.  They also give all the side effects Common to Rare to Dangerous.   I am amazed at how little info is given to my civilian friends. My Oncologist always gives me all the information on the drugs she plans to use before we start.  That way I can decide whether I want the treatment or not.They, also, allow me to consult a Lymphoma specialist at the UW and Fred Hutchinson.  My doctor consults with them and with other Cancer Research Centers to get as much information as she can. I am still waiting for the cure of follicular NHL to happen before it is too late for me.  I've pretty much run out of options.  It is incurable right now.  My remissions have been really short. Kitty GrammaKitty Mon, 11 Feb 2008 00:00:00 GMT I agree with you Chapbin ~~ In fact I stopped taking aridia after 2 years as well for exactly the same reason!  I had attended a conference in Melbourne which was run by the IMF and Dr. Durie was there.  He asked the assembled people (about 250) of them how many had ONJ.  There were about a dozen people who raised their hands.  He then said that this was indicative of the response that he was finding at similar seminars all over the world.  I thought about it long and hard, then I was involved in a car accident - actually I was hit by a car as I walked across the street, but the amazing thing was that NOTHING was broken, even though  I have leisions on ALL my bones!!  The nursing staff said that I should be the Aridia 'cover girl' advertising how strong the drug had made my bones!!!  However not long after that,I started feeling pain in my mouth, and remembering the ONJ warning, I decided to stop the Aridia.  Now the oncologist has said, looking at my 'sore tooth' , that I actually have ONJ.  I'm going to see the dentist tomorrow and I'm hoping that he is going to say it is something else.  This is because the oncologist who made the diagnosis was not my usual onc. but someone who was covering for my man while he was on holiday.  I'm hoping that he was not experienced enough and has made  mistake!!!  Keep your fingers crossed for me -- Thanks, Cath poppy/cath Tue, 12 Feb 2008 00:00:00 GMT Just to bring this message line to a close, I did see my dentist yesterday and his diagnosis is that I have an impacted wisdom tooth, NOT ONJ!!  I waltzed out of his office with a huge smile on my face -- something I have never done before.  I don't know why the locum oncologist thought that I had ONJ - perhaps he was just too inexperienced, but I'm so happy that he was wrong.  So, with all the help and advice that you all have given I have learned heaps about ONJ!  I hope the same is true for all of you.  I'm glad that I did not rely on one diagnosis, and I am eagerly looking forward to seeing my own oncologist and seeing what he has to say.  Thanks to everyone for your support!  Cath poppy/cath Sat, 16 Feb 2008 00:00:00 GMT Hi Cath I have written some notes on this problem before, the problem being is that on this site there isn't a seperate heading for ONJ or bisphosphonates with all messages on. I cannot find my previous notes anywhere now. I can type in a variety of things and still I can't find them. If this was under a seperate heading like breast colon ovarian etc it would make things easier.I have had ONJ for several years. I suspected it and diagnosed it myself in 2002, pressed for more info in 2003 told to remain on Zometa. then in 2004 it was finally confirmed and off zometa. I have spent a lot of time researching this and it seems that until a case in brought to the companies it is unlikely to get much media attention. Still I find doctors and dental surgeons alike know nothing about this condition, so I have found my own way reading through the maze of little info. One site you can look up is Professor Salvatore Ruggiero at LOng Island Jewish Medical centre, He and Marx et all warned the drugs companies 99/2000 that they were seeing this condition and it was they who pressed the FDA to ensure the drug companies listed this condition in their side effects.Still 8 years on little is known how it might be caused, no evidence links the Bisphosphonate induced Osteonecrosis of the jawbone to Biphosphonates or any one of them in particular. No case to my knowledge has yet been tried in the courts. My knowledge so far isZometa is more potent than any other Bisphosphonate BISONJ can be seen after taking BISONJ is difficult to diagnose.Onj causes much suffereing to those affected.Numbers affected are presently misleading as  it is not diagnosed accurately, if at all.There appears to be a link with the strength and duration of time the drug is taken.All advice is to leave well alone.No surgery should be carried out to correct dying jawbones. it has failed to heal.Extrusion of jawbone through the gums can be debrided but no invasive procedures are recommended as healing is delayed considerably.All dental work should be completed and healed before taking the drug. Hot salty water rinses are as effective at reducing the risk of infection as any prescribed mouthwashes in my own experience (5 times daily)It has been proposed that only myleoma patients are affected. if you have had chemotherapy, if you have had steroids, had cancer, only in cases where BIS is given IV. In the cases I have heard about, this doesn't seem to be the case. I had proposed to start an ONJ UK website but I have stage IV cancer and have been too ill to follow through with this.National dental associations are now getting to grips with this and if you look up various countries' sites you will gather more info, more than oncology sites. I hope this helpsVelvet (UK)  Velvetjb Sat, 16 Feb 2008 00:00:00 GMT Thank you Velvet for your very comprehensive reply!  As you will have read, I was misdiagnosed but this has been a steep learning curve and I'm sure that we have all benefited from the information we have learned through this experience.  I do hope that others, who are considering using these drugs, will fully research them before they begin.  I was sorry to hear that you are so ill, and sincerely hope that you will come through this bout.  My experience with myeloma has been like a roller coaster - up then down then slowly up again, etc.  Is this what your journey has been like?  Because of this analogy I have been able to focus on gradually climbing out of the depths of sickness to a point where I can function once again - and it has worked at least three times when all around me felt that I was on my last legs.  Each instance has given scientists time to develop yet something new to treat myeloma which has given me yet another year....and so it has gone.  I hope for your sake that something similar can happen for you.  Best wishes Velvet and thank you for your response.  Cath poppy/cath Sun, 17 Feb 2008 00:00:00 GMT Hi-I was diagnosed with osteonecrosis of the jaw in April when Ihad to have one of my few remaining teeth pulled--it was goingto fall out anyhow. And the PAIN is excruciating. I haven't heard of other people suffering as much pain as I have. I am on 125 mg fentanyl and oxycodone and motrin for the break through pain. Am I havihg a freak reaction> I t feels like someone is poking an icepick into my jaw. Now, there's going to be another problem on the other side. It has taken me a while to finally find an oral surgeon who will take medicaid. I hope he knows how to help me. Sharon Sharonb Sat, 09 Aug 2008 00:00:00 GMT Hi Sharon ~~Sorry to hear that you have Osteonecrosis.  When I wrote the last message I'd been told that this is what I had, but I sought a second opinion and was told that it was NOT Osteo, but rather an impacted wisdom tooth that had become infected.  So mine was 'cured' with antibiotics and regular salt water mouth washes.  I can only imagine your pain, and I'd be thinking that you should request a higher fentaynel dose.  I am currently on 300mg every 48 hours, so I change them every two days.  I use Ordine 10 for break through and have at last reached a stage where I'm pain free most of the time.  My use if for bone pain due to all the leisions that I have in my bones.  I started at 25mg five years ago and have gradally increased the patches - staying at different levels until the pain again became too much.  I was worried about becoming an addict, but my oncologist said that this wouldn't happen and that the only 'side effect' would be a reduction in pain.  He was right and if I were in your situation I'd be asking for a higher dose until you killed the pain.  i was also told when they thought that I had Osteonecrosis that there was NO treatment -- but that was a while ago and perhaps they have found something by now.  I certainly hope so for your sake.  I would imagine that ultimately it would be necessary to get rid of all the infected bone so that the area could heal. Whatever the treatment I wish you all the best in the hope that you will soon be pain free.  Best wishes, Cath  poppy/cath Sat, 09 Aug 2008 00:00:00 GMT