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?
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Re: Weekly Poll - Bisphosphonates & Osteonecrosis Of The Jaw
Hi I was given Zometa for a short period of time back in 2005 about 3 months if memory serves me , I was taken off of it as I need some extensive Dental work done , I have never been put back on it and so far seem to be doing ok as far as bone strength is conserned , I however have lost about 4" in height from my time in the US Navy -On my DD-214 my height was listed as 5' 11" & I now am 5' 7" I'm sure some of the height was lost prior to my coming down with multiple myeloma but most of it has been in the last 6 or 7 years. I had no problems with my jaw but have lost some teeth that were support teeth for a bridge in the front of my mouth, they just crumbled & the bridge fell out ! N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Weekly Poll - Bisphosphonates & Osteonecrosis Of The Jaw
Hi, I was diagnosed with multiple myeloma at age 42, which is 10 years ago. I was given aredia for about 1 year then followed by zometa for about 3 years. Both drugs were discontinued permanently at that time due to necrosis in my jaw being diagonosed around that time. I had some dental work done, and the jaw bone in that area didn`t heal for months. It was then figured out that those drugs were responsible. The damage is not reversible. The bone is exposed, and sometimes bleeds. It also becomes infected frequently. There is a procedure I had done at the doctor`s office (facial surgeon), which was minor surgery, where they buff down the bone, and stitch up the gum. Unfortunately, it doesn;t last. However, there is a good mouthwash (peridex), which when swabbed on the affected area, heals wonderfully. The bad part about not being able to take these drugs, is that my bones are becoming brittle and breaking. I recently had spinal fusion surgery, due to myloma compression fractures. During recovery, my leg broke, so i needed more surgery to get a nail and screws. I feel well now, however still having mobility issues, but just learned through a ct scan that I will need to start Velcade again due to tumors discovered throughout my body. I WILL be well again soon, and look forward to spending the summer at my summer home with my family, bbqing, fishing, spending time on the beach, and just enjoying life. Life is good......even when it doesn`t look so good!!!
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cathy sharpe
Re: Weekly Poll - Bisphosphonates & Osteonecrosis Of The Jaw
I received Zometa on a regular basis shortly after my Multiple Myleoma diagnosis ten years ago for a period of 8-1/2 years. I had a terrible pain in my mouth and went to the dentist. He told me it was a canker sore. When it did not heal after a week I went back. I was sent to an oral surgeon who told me that it was Osteonecrosis of the Jaw. To make a long story short, I was finally seen two weeks later by a Maxillofacial surgeon. He gave me several medications and a very strong pain mediciation. Eventually, the bone became lose and was removed. This process has taken a year and a half and every few months another bone becomes exposed. It is very painfull. Unfortunately, I have learned to live with this "side effect" of Zometa.
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Terry
Re: Weekly Poll - Bisphosphonates & Osteonecrosis Of The Jaw
My partner was also on Zometa and developed ONJ back in 2001/2002. He complained to his doctor of the pain and his doctor had no idea what it was and continued the treatment. He went to a dentist who pulled out a bunch of his perfectly healthy teeth, which was the worst thing he could have done. Then as the jawbone died, the kept removing more of it because they had no idea what to do. In the end he stopped them when they wanted to remove yet more bone again. A big chunk of jaw bone came loose and was removed. After close to 10 years, when the gums were all totally healed, he's now got some false teeth he can clip onto his existing ones. He's very careful with antibacterial mouthwashes used regularly. Recently he had a bit of bone come through again which he was able to pull out but overall, no more problems.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
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