Osteonecrosis of the jaw

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

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

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

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 is

Zometa is more potent than any other Bisphosphonate

BISONJ can be seen after taking BIS

ONJ 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 helps

Velvet (UK)

 

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

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

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