This week’s poll is about osteonecrosis of the jaw as a side effect of bisphosphonates.
A few clarifications:
First, this poll is for all myeloma patients who have taken a bisphosphonate to prevent, slow down, or repair bone damage caused by myeloma. Bisphosphonates commonly used for myeloma bone damage include Zometa (zoledronic acid) and Aredia (pamidronate).
Second, osteonecrosis of the jaw (ONJ) is a condition that is associated with a loss of blood supply to the jaw, causing the jawbone tissue to die. It can occur in a small fraction of multiple myeloma patients during bisphosphonate treatment.
Third, if you are a caregiver or family member of a myeloma patient, feel free to answer on their behalf.
As always, feel free to post comments, thoughts, or feedback in the space below. They can be very useful to other readers.
If you did develop ONJ, tell us about your experience. How long were you on a bisphosphonate? Which one? Did you have dental work that triggered the ONJ? How has your ONJ been treated?
The Beacon also conducted this same weekly poll in 2012. You can view the results of that poll here:
https://myelomabeacon.org/forum/weekly-poll-bisphosphonates-osteonecrosis-of-the-jaw-2012-t999.html
Forums
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
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
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
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Brian O
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
I took Zometa for 3 years before developing ONJ. A piece of necrotic bone migrated into sinus cavity requiring surgery to correct. I saw Dr. Robert Marx at the University of Miami, the ONJ guru.
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lmille91
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
It would be interesting to know of those that did develop ONJ, how many were on Zometa vs. Aredia. The studies I have read seem to indicate that there is a higher risk with Zometa.
I also wonder about side effects generally. I have heard that Aredia has less overall side effects, primarily because the infusion period is longer.
Ron
I also wonder about side effects generally. I have heard that Aredia has less overall side effects, primarily because the infusion period is longer.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
I didn't know Aredia was an option or I may have selected that vs. Zometa. I was on Zometa for approximately 24 months, although the last 9 months was on a quarterly basis.
I was scheduled to have some routine oral surgery which included removing a couple of wisdom teeth and having two implants installed where I had extractions prior to being diagnosed. The oral surgeon researched and discussed the issue with other colleagues, and would not consider treating me until I have been off Zometa for at least 18 months. From what I have read, Zometa stays in the system for a very long time.
Is 18 months long enough? Interested to see what experiences others may have had with their dentists or oral surgeons.
I was scheduled to have some routine oral surgery which included removing a couple of wisdom teeth and having two implants installed where I had extractions prior to being diagnosed. The oral surgeon researched and discussed the issue with other colleagues, and would not consider treating me until I have been off Zometa for at least 18 months. From what I have read, Zometa stays in the system for a very long time.
Is 18 months long enough? Interested to see what experiences others may have had with their dentists or oral surgeons.
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indy mike - Name: Mike Mathias
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 51
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
Wow, that is a name from the past !
I had worked with Booby Marx and John Kent (LSU) in the past. Both are world class oral surgeons, and both are working on the ONJ - Zometa project(s).
Tell Dr Marx greetings from Nebraska.
I had worked with Booby Marx and John Kent (LSU) in the past. Both are world class oral surgeons, and both are working on the ONJ - Zometa project(s).
Tell Dr Marx greetings from Nebraska.
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R neb
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
I was having jaw pain and it turned out to be a cracked molar. My oncologist was worried about this, and we stopped the Zometa IV four month ago, after I had only been on it for 8 months. I have no signs of the jaw disease. The tough part of it is that it can't really be diagnosed until you have it. So reaction is I guess the best treatment. Risk poor bone development over a terrible bone problem.
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Big Bill
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
Can the Aredia be given maybe every six months and still be effective?
Also, is there such a thing as jaw exercises to bring blood to the jaw?
Also, is there such a thing as jaw exercises to bring blood to the jaw?
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deenussen
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
deenussen,
I started on Aredia once a month at the begining of my diagnosis and am now on it once every 3 months. I have not heard of longer dosing than once every 3 months. I think it is not considered effective if the dosing is longer than 3 months.
In total, I have been on Aredia now for over 5 years. I have never had any jaw or teeth issues. I don't believe that jaw exercises would help prevent it. The Beacon poll showing 90% no issues with 10% developing jaw problems appears consistent with other data that I have seen on this.
Also Zometa appears to carry more higher risk than Aredia from other data I have seen. So I would suspect that most of those that have developed jaw problems were on Zometa. Zometa, which was developed more recently, is prescribed more now than Aredia.
Ron
I started on Aredia once a month at the begining of my diagnosis and am now on it once every 3 months. I have not heard of longer dosing than once every 3 months. I think it is not considered effective if the dosing is longer than 3 months.
In total, I have been on Aredia now for over 5 years. I have never had any jaw or teeth issues. I don't believe that jaw exercises would help prevent it. The Beacon poll showing 90% no issues with 10% developing jaw problems appears consistent with other data that I have seen on this.
Also Zometa appears to carry more higher risk than Aredia from other data I have seen. So I would suspect that most of those that have developed jaw problems were on Zometa. Zometa, which was developed more recently, is prescribed more now than Aredia.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Weekly Poll - Bisphosphonates & Jaw Osteonecrosis - 2014
Since I was blessed with good teeth (genetically), would that factor into the decision to halt or not halt Aredia? Do any studies account for this?
I have had very few cavities in my 51 years, and I do have a sweet tooth.
I have had very few cavities in my 51 years, and I do have a sweet tooth.
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stann
13 posts
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