[Bill G]

Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014

by Bill G on Fri Apr 04, 2014 10:10 pm

I'm sorry I missed the survey. I had 7 infusions of Zometa over the course of a year and developed ONJ. I didn't have any jaw pain but I had what felt like teething in the gums where I had a molar extracted a year and a half before. A small piece of bone emerged through the gum but I didn't know what it was until went in for a teeth cleaning a month or two later.

My dentist recognized it immediately and referred me to an oral surgeon. I saw this oral surgeon once and then changed to an oral surgeon at Emory Winship Cancer Institute, where I receive treatment for my multiple myeloma.

I told my oncologist that I thought they should have described some of the symptoms patients should be looking for. I assumed I should be looking for jaw pain. By that time, the ONJ might be more advanced. I could have stopped the Zometa infusions a month or two earlier if I knew what to look for.

As it is, I have been off Zometa for 6 months now with no improvement, but not worse either. My oral surgeon is great and is taking a conservative approach. I rinse twice a day with chlor­hexi­dine and just monitor it. He said that they used to do surgery to remove that section of bone, but they usually didn't heal well and resulted in a larger problem area.

[Ron Harvot]

Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014

by Ron Harvot on Wed Apr 09, 2014 1:49 pm

Stan,

The issues with bisphosphonates leading to osteonecrosis of the jaw are not linked to prior dental health from what I have been able to determine. The bisphosphonates work to increase bone density and therefore counteract multiple myeloma activity in breaking bone down. However, the increase in density also means that it could lead to less blood flow within the bone to keep it healthy. So the bone may become more brittle.

As the poll suggests, only about 10% of the multiple myeloma population on bisphosphonate treatment develop osteonecrosis. That means 90% have not had an issue with the treatments. So the benefits of the treatment in preventing lytic lesions and reducing calcium build up in the blood due to the dissolving bone which may lead to renal failure has to be weighed against the risks of the treatment. All multiple myeloma drugs have side effects and carry risks.

[Eric Hofacket]

Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014

by Eric Hofacket on Wed Apr 09, 2014 3:57 pm

I have been having bisphosphonate every 28 days for over 6 years, ever since I was diagnosed with multiple myeloma. I had read about the possibility of problems in the jaw, so I have been looking out for it. For a small period about 3 years ago I thought I felt some jaw bone ache. but whatever that was, it didn't last long and I never had a problem since.

My local haematologist says this is very rare and this is supported as so far none of the 50 patients in my support group have told me or anyone to my knowledge that they have had this problem.

As my kidneys are a bit wonky and so my creatinines are usually 140 - 180, I only get half the dose others get.

Six years ago it was put in via a canular in my wrist. But those veins are not so good now and my hospital got the green light to put it in via one of the veins on the inside of the elbow, thereby avoiding a canular - GREAT! and it goes in very quickly.

Brian

Brian,

I have been having jaw ache as well starting last year. I only get it for short periods of time when I start working out, such as when starting a swim workout, then it goes away. It is in both sides of the jaw not in one specific area.

My dentist asked if I was grinding my teeth when I start working out, but I am very sure I do not. Swimming is about breathing, after all, and you really cannot have a good breathing pattern if you are grinding you teeth. Maybe if I was weight lifting teeth grinding could be an problem, but not in cardio activites.

I am not certain by any means that it is related to Aredia, but I had never had this before until after I had been on Aredia for a little over a year. I have never heard of anyone else having possible bisphosphonate related jaw ache unitl your post.