Hello,
Aredia (pamidronate) is given to Ian once per month. After the autologous stem cell transplant in January 2014, he gets pamidronate, serum free light chain testing, and other blood tests once per month.
The problem is that Ian had to get a tooth removed and so the oncologist recommended we postpone the pamidronate treatment for a month to let the gum heal up. We went to the dentist and had the tooth removed.
A month later, he started again with the pamidronate as usual and we noticed that the gum never healed or closed up properly. The bone of the jaw is still exposed and started to go dark in color and rot.
The oncologist did say at the time that when a tooth is getting removed it needs to properly heal up and close, and if you do surgery on it to stitch the gum up, it will only rot below or on the sides.
What are our options? This seems to be a problem as he is very aware of it, and also he can taste it. It's like trouble waiting on the corner, infections and further complications!! What can we do?
Thanking you kindly, Joanna
Forums
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: Aredia & osteonecrosis of the jaw - what to do?
Johanna,
I have been on Aredia for three years since my myeloma diagnosis. I was receiving it monthly for about 6 months before my stem cell transplant (SCT), but afterwards it was reduced to every three months. I asked my oncologist about using Zometa instead of Aredia, since it seems most people with myeloma are using Zometa and there was some clinical trial evidence that Zometa has some anti-myeloma effect. He said he could make the switch, but my chances of jaw bone osteonecrosis would increase with Zometa. I stayed with Aredia but have not had any problems with osteonecrosis so far, thankfully.
I have had a conversation with my dentist about this potential complication with dental work. To try to avoid complications, I get my teeth cleaned more frequently than typical, and my insurance will pay for it and, at the first indications of a problem, it gets fixed before it ends up requiring work later that may get into the jaw bone.
It is my understanding that osteonecrosis of the jaw can become a serious problem. I believe every myeloma doctor is probably aware of this, but they are not the specialist to treat the condition. This is probably out of the typical dentist skill set and expertise too.
If I were you, I would seek out an oral surgeon – ideally one who may have some experience with this. I would not expect your oncologist to be able to do much except stop the Aredia. Maybe your oncologist can make a referral if you need one for insurance. Is your dentist or oncologist giving you any guidance or advice on this and what you need to do next?
Please lets us know what you learn and find out. It could be valuable experience for the rest of us who may have this problem now or in the future.
Best wishes to you and your husband,
Eric
I have been on Aredia for three years since my myeloma diagnosis. I was receiving it monthly for about 6 months before my stem cell transplant (SCT), but afterwards it was reduced to every three months. I asked my oncologist about using Zometa instead of Aredia, since it seems most people with myeloma are using Zometa and there was some clinical trial evidence that Zometa has some anti-myeloma effect. He said he could make the switch, but my chances of jaw bone osteonecrosis would increase with Zometa. I stayed with Aredia but have not had any problems with osteonecrosis so far, thankfully.
I have had a conversation with my dentist about this potential complication with dental work. To try to avoid complications, I get my teeth cleaned more frequently than typical, and my insurance will pay for it and, at the first indications of a problem, it gets fixed before it ends up requiring work later that may get into the jaw bone.
It is my understanding that osteonecrosis of the jaw can become a serious problem. I believe every myeloma doctor is probably aware of this, but they are not the specialist to treat the condition. This is probably out of the typical dentist skill set and expertise too.
If I were you, I would seek out an oral surgeon – ideally one who may have some experience with this. I would not expect your oncologist to be able to do much except stop the Aredia. Maybe your oncologist can make a referral if you need one for insurance. Is your dentist or oncologist giving you any guidance or advice on this and what you need to do next?
Please lets us know what you learn and find out. It could be valuable experience for the rest of us who may have this problem now or in the future.
Best wishes to you and your husband,
Eric
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Aredia & osteonecrosis of the jaw - what to do?
Your husband should be seen by an oral surgeon with experience treating people with osteonecrosis of the jaw (ONJ) from bisphosphonate usage, in this case Aredia. Your oncologist might be able to recommend someone.
Your husband probably shouldn't get the Aredia for now.
All the best to your husband. This isn't an easy problem to deal with once it starts, but it should heal with the appropriate treatment.
Nancy in Phila
Your husband probably shouldn't get the Aredia for now.
All the best to your husband. This isn't an easy problem to deal with once it starts, but it should heal with the appropriate treatment.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Aredia & osteonecrosis of the jaw - what to do?
Thanks, guys, for the reply.
We are still on pamidronate, but I suspect will have to stop when we decide what is the best way to move forward. We haven't discussed this with the oncologist yet, but won't be surprised if he would give us a row and pull us by the ears. We should have mentioned it sooner, as it's going on for a while. He did say at the time, before the tooth extraction, that surgery may not be the best option, and that even if you close up the gum with surgery it will still rot in below on the sides of it.
I even saw that , on a notice Novartis came out with concerning Zometa and Aredia, they said its use in conjunction with chemo bla bla ... and that surgery may only enhance the existing problem.
Now the chase is on to find a good dentist that has seen this before and can treat it.
I will keep you posted and let you guys now about our progress later on.
Thanking you kindly, Joanna & Ian
We are still on pamidronate, but I suspect will have to stop when we decide what is the best way to move forward. We haven't discussed this with the oncologist yet, but won't be surprised if he would give us a row and pull us by the ears. We should have mentioned it sooner, as it's going on for a while. He did say at the time, before the tooth extraction, that surgery may not be the best option, and that even if you close up the gum with surgery it will still rot in below on the sides of it.
I even saw that , on a notice Novartis came out with concerning Zometa and Aredia, they said its use in conjunction with chemo bla bla ... and that surgery may only enhance the existing problem.
Now the chase is on to find a good dentist that has seen this before and can treat it.
I will keep you posted and let you guys now about our progress later on.
Thanking you kindly, Joanna & Ian
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johanna - Name: Joanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: august 2012
- Age at diagnosis: 60
Re: Aredia & osteonecrosis of the jaw - what to do?
Joanna,
Ian's oncologist really needs to be informed that this is happening with him. The oncologist is probably the best person to arrange for Ian to see the proper specialist for the problem – whether through a direct referral, or by referring you to other people at Ian's treatment center who will know the best medical professional for the problem. This is not something where you just want to go to any dentist down the street and have them deal with the problem.
ONJ is not some minor side effect of treatment. If not properly addressed, it can develop into a serious problem which could complicate – perhaps even compromise – the treatment of Ian's myeloma. The area of the jaw that is decaying may become a locus of persistent, hard-to-treat infection, and that's not something you want to happen in someone with myeloma.
Ian's oncologist really needs to be informed that this is happening with him. The oncologist is probably the best person to arrange for Ian to see the proper specialist for the problem – whether through a direct referral, or by referring you to other people at Ian's treatment center who will know the best medical professional for the problem. This is not something where you just want to go to any dentist down the street and have them deal with the problem.
ONJ is not some minor side effect of treatment. If not properly addressed, it can develop into a serious problem which could complicate – perhaps even compromise – the treatment of Ian's myeloma. The area of the jaw that is decaying may become a locus of persistent, hard-to-treat infection, and that's not something you want to happen in someone with myeloma.
Re: Aredia & osteonecrosis of the jaw - what to do?
I hope the best for your husband. But to emphasize what Nancy, Cheryl and I suggested earlier, you should probably be looking for an oral surgeon and not a dentist. It is my understanding that dentists are not trained to treat osteonecrosis of the jaw. Anything that starts affecting the jaw bone itself is out of most dentists' area of expertise.
Your dentist may be able to sew up the hole left from the tooth, but I do not know whether he can do anything beyond that, and the bone could still be continuing to die and rot as you have said. I have no idea what is done to treat osteonecrosis of the jaw, but I believe only an oral surgeon would know. I believe your dentist could certainly recommend one, but I would inquire about experience with jaw osteonecrosis, I do not know how common this condition is.
Just for the benefit of anyone else who plans on getting dental treatment while on bisphosphonates, I will summarize the exchange I had with my dentist who is really good.
My dentist records all the medications and my health condition in his records. He knew about bisphosphonates and the risk of jaw bone osteonecrosis when there is any dental work or injury that affects the jaw bone. He had lots of patients on bisphosphonates and mentioned that it was really more of a concern when taking them through IV and not orally.
I mentioned that all my bisphosphonates had been given through IV, and, to the best of my knowledge, that was the standard practice for myeloma patients. He did not know that and that got his attention. Then I mentioned that I received it monthly during induction therapy, and every three months after that indefinitely, while the typical IV dosage for someone being treated for osteoporosis may just be once a year. That got his attention even more. He had not had a patient like me before and this was beyond his experience to know what the risks were.
Though he knew about bisphosphonates, to my knowledge all of his patients before me were predominantly on oral medication and, if anyone was on IV, it was at just a fraction of the levels of medication I was receiving.
My lesson learned: It was up to me to educate my dentist on how and how much bisphosphonates are given to those with myeloma. I cannot expect that he would know this – myeloma is pretty uncommon.
Since the risk of doing any work that would affect the jaw was really unknown, we decided to do more frequent cleanings and to promptly treat problems before they progressed to the point where it may involve the jaw bone. He said that, once osteonecrosis starts, it can be hard to control and stop. And if a situation would arise where we needed to do any work that did involve the jaw, we would try to plan ahead and stop the bisphosphonate treatment as early as possible and not restart until it was clear the jaw had healed. We would need to talk and plan this with my oncologist.
Best wishes,
Eric
Your dentist may be able to sew up the hole left from the tooth, but I do not know whether he can do anything beyond that, and the bone could still be continuing to die and rot as you have said. I have no idea what is done to treat osteonecrosis of the jaw, but I believe only an oral surgeon would know. I believe your dentist could certainly recommend one, but I would inquire about experience with jaw osteonecrosis, I do not know how common this condition is.
Just for the benefit of anyone else who plans on getting dental treatment while on bisphosphonates, I will summarize the exchange I had with my dentist who is really good.
My dentist records all the medications and my health condition in his records. He knew about bisphosphonates and the risk of jaw bone osteonecrosis when there is any dental work or injury that affects the jaw bone. He had lots of patients on bisphosphonates and mentioned that it was really more of a concern when taking them through IV and not orally.
I mentioned that all my bisphosphonates had been given through IV, and, to the best of my knowledge, that was the standard practice for myeloma patients. He did not know that and that got his attention. Then I mentioned that I received it monthly during induction therapy, and every three months after that indefinitely, while the typical IV dosage for someone being treated for osteoporosis may just be once a year. That got his attention even more. He had not had a patient like me before and this was beyond his experience to know what the risks were.
Though he knew about bisphosphonates, to my knowledge all of his patients before me were predominantly on oral medication and, if anyone was on IV, it was at just a fraction of the levels of medication I was receiving.
My lesson learned: It was up to me to educate my dentist on how and how much bisphosphonates are given to those with myeloma. I cannot expect that he would know this – myeloma is pretty uncommon.
Since the risk of doing any work that would affect the jaw was really unknown, we decided to do more frequent cleanings and to promptly treat problems before they progressed to the point where it may involve the jaw bone. He said that, once osteonecrosis starts, it can be hard to control and stop. And if a situation would arise where we needed to do any work that did involve the jaw, we would try to plan ahead and stop the bisphosphonate treatment as early as possible and not restart until it was clear the jaw had healed. We would need to talk and plan this with my oncologist.
Best wishes,
Eric
Last edited by Eric Hofacket on Tue Mar 17, 2015 2:32 pm, edited 2 times in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Aredia & osteonecrosis of the jaw - what to do?
Hi Johanna,
I think that all the previous posters have very good suggestions. I just wanted to add that, at the cancer centre I attend, there is a dental clinic. I had my teeth very thoroughly examined there before and after my autologous transplant to make sure that I did not have any problems that would require any sort of dental surgery, fillings, or anything else that required treatment. I have never had such thorough dental X-rays done, either, as were done at that time.
My family dentist is also aware of my problems with myeloma, and is on the alert for any issues that way now. I still go for twice yearly checkups with the family dentist.
Maybe your cancer centre also has a dental clinic? This clinic is for any cancer patient who is referred there, not just for myeloma patients.
Hope that helps.
I think that all the previous posters have very good suggestions. I just wanted to add that, at the cancer centre I attend, there is a dental clinic. I had my teeth very thoroughly examined there before and after my autologous transplant to make sure that I did not have any problems that would require any sort of dental surgery, fillings, or anything else that required treatment. I have never had such thorough dental X-rays done, either, as were done at that time.
My family dentist is also aware of my problems with myeloma, and is on the alert for any issues that way now. I still go for twice yearly checkups with the family dentist.
Maybe your cancer centre also has a dental clinic? This clinic is for any cancer patient who is referred there, not just for myeloma patients.
Hope that helps.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Aredia & osteonecrosis of the jaw - what to do?
This is a really good thread.
Before I offer up the following links, note that I would agree with Tracy J's earlier statements about the risk / reward tradeoff of bisphoshponates in this earlier thread:
"Zometa infusions," forum disc. started Apr 23, 2014
If I end up needing to use a bisphosphonate, I would very likely agree to do so. But this thread underscores that one really needs to be on top of monitoring one's dental health if one is on an IV bisphosphonate.
Just so one is clear about what ONJ can be like as a result of Aredia or Zometa, you might want to look at the images in these links. Warning: These pictures are not for the faint of heart and you might find them to be disturbing.
Google image search - "Zometa osteonecrosis"
Google image search - "Aredia osteonecrosis"
Before I offer up the following links, note that I would agree with Tracy J's earlier statements about the risk / reward tradeoff of bisphoshponates in this earlier thread:
"Zometa infusions," forum disc. started Apr 23, 2014
If I end up needing to use a bisphosphonate, I would very likely agree to do so. But this thread underscores that one really needs to be on top of monitoring one's dental health if one is on an IV bisphosphonate.
Just so one is clear about what ONJ can be like as a result of Aredia or Zometa, you might want to look at the images in these links. Warning: These pictures are not for the faint of heart and you might find them to be disturbing.
Google image search - "Zometa osteonecrosis"
Google image search - "Aredia osteonecrosis"
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Aredia & osteonecrosis of the jaw - what to do?
You need to be in contact with a University Medical Center--Oral Surgery Dept.
I would suggest : LSU- Medical Center 1100 N Florida Ave. John N Kent DDS,OMS
Or: Univ of Miami-Jackson Memorial Campus-Coral Gables. Robert Marx, DDS,OMS
Or: Northwestern U --Oral Surgery Dept.
These entities/ Providers have done advance research/ set up treatment protocols for your husbands problem.
Basically, your husbands jaw is dying/ becoming "de-vitalized" bone, through loss of blood supply and change in Osteoclast/ Osteoblast function. He needs to be seen and evaluated by a specialized Provider. Soon.
Good luck.
I would suggest : LSU- Medical Center 1100 N Florida Ave. John N Kent DDS,OMS
Or: Univ of Miami-Jackson Memorial Campus-Coral Gables. Robert Marx, DDS,OMS
Or: Northwestern U --Oral Surgery Dept.
These entities/ Providers have done advance research/ set up treatment protocols for your husbands problem.
Basically, your husbands jaw is dying/ becoming "de-vitalized" bone, through loss of blood supply and change in Osteoclast/ Osteoblast function. He needs to be seen and evaluated by a specialized Provider. Soon.
Good luck.
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Rneb
Re: Aredia & osteonecrosis of the jaw - what to do?
I practiced dentistry for 35 years and I don't recall ever seeing ONJ that I know was caused by Zometa or Aredia. However, I did see patients with ONJ and, as Multibilly has described, the cases were disastrous. I referred the patients to an oral surgeon who treated them with way less success than one would hope.
Prevention is certainly the key, but even good oral hygiene doesn't prevent it. Aredia (and in particular Zometa) can and do cause ONJ (another two edged sword, I guess).
I agree with the NancyS, Eric, Cheryl, Rneb, and Multibilly – You need to see an oral surgeon with knowledge and experience with ONJ, and, unfortunately, there aren't many of those and their successful treatment rate is pretty low.
Coach Hoke
Prevention is certainly the key, but even good oral hygiene doesn't prevent it. Aredia (and in particular Zometa) can and do cause ONJ (another two edged sword, I guess).
I agree with the NancyS, Eric, Cheryl, Rneb, and Multibilly – You need to see an oral surgeon with knowledge and experience with ONJ, and, unfortunately, there aren't many of those and their successful treatment rate is pretty low.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
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