Hi everyone,
My brother was diagnosed with multiple myeloma in August 2015. He was treated with Revlimid, Velcade, and dexamethasone and had a stem cell transplant in 2016.
He's had a recurrence of his multiple myeloma recently which put him back on Velcade and dex. He's been having Zometa treatments as well and today was told by his dentist that he has osteonecrosis of the jaw (ONJ). He sees an oral surgeon tomorrow for a consult.
How bad is this?
He's very anxious. Thanks so much!
Jen
Forums
9 posts
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jlyurko - Name: Jen
- Who do you know with myeloma?: Brother
- When were you/they diagnosed?: 9/15
- Age at diagnosis: 46
Re: Osteonecrosis of the jaw from Zometa - how bad is it?
We recently saw our dentist for a check before transplant and told him that my wife is receiving Zometa due to her multiple myeloma. She got I think 2 infusions before her kyphoplasty.
Our dentist told us that there is an on going battle between rheumatologists and dentists about bisphosphonates such as Zometa. Rheumatologists love bisphosphonates, whereas dentists hate them.
He told us that as per now he would not be able to do any new procedure on the the teeth of my wife, but that it would have to be done at the hospital with very specific rules.
Luckily my wife has very healthy teeth so there is nothing special to do for now, but what is sure is that after having Zometa, you must inform your dentist about it and he must pay special care for all treatments.
Our dentist told us that there is an on going battle between rheumatologists and dentists about bisphosphonates such as Zometa. Rheumatologists love bisphosphonates, whereas dentists hate them.
He told us that as per now he would not be able to do any new procedure on the the teeth of my wife, but that it would have to be done at the hospital with very specific rules.
Luckily my wife has very healthy teeth so there is nothing special to do for now, but what is sure is that after having Zometa, you must inform your dentist about it and he must pay special care for all treatments.
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Pauillac - Name: Louise Rose
- Who do you know with myeloma?: my wife
- When were you/they diagnosed?: March 2017
- Age at diagnosis: 42
Re: Osteonecrosis of the jaw from Zometa - how bad is it?
Hi Jen,
I have not had osteonecrosis of the jaw, but others here in the forum have had it and discussed it in a number of different forum threads. This link will take you to a list of forum threads that have either "osteonecrosis", "ONJ", or "jaw" in the thread subject:
I think you will find a number of discussions that will be helpful to you and your brother. (I created the list using the forum's "advanced search" function.)
Also, Beacon columnist Andrew Gordon has written two articles about his experience with ONJ:
"Myeloma Lessons: This Was A Real Surprise!", The Myeloma Beacon, May 31, 2015
"Myeloma Lessons: Some Risks Are Not Worth Taking," The Myeloma Beacon, March 9, 2016
I hope all works out well for your brother and his (potential) ONJ. Please let us know what he finds out and, if he has it, what steps are taken to address it.
I have not had osteonecrosis of the jaw, but others here in the forum have had it and discussed it in a number of different forum threads. This link will take you to a list of forum threads that have either "osteonecrosis", "ONJ", or "jaw" in the thread subject:
I think you will find a number of discussions that will be helpful to you and your brother. (I created the list using the forum's "advanced search" function.)
Also, Beacon columnist Andrew Gordon has written two articles about his experience with ONJ:
"Myeloma Lessons: This Was A Real Surprise!", The Myeloma Beacon, May 31, 2015
"Myeloma Lessons: Some Risks Are Not Worth Taking," The Myeloma Beacon, March 9, 2016
I hope all works out well for your brother and his (potential) ONJ. Please let us know what he finds out and, if he has it, what steps are taken to address it.
Re: Osteonecrosis of the jaw from Zometa - how bad is it?
I understood / understand that osteonecrosis of the jaw can be very nasty and more frequent than many like to think about.
Five years ago, when I was first diagnosed, my teeth were bad and I had planned to have rather extensive work done on them. It's a genetic thing for me; took very good care of my teeth and went to the dentist four times a year just to keep up with the dental caries. I've had more root canals done than many people have teeth. So I was in a bit of a pickle.
And finally decided that what the hey, I got 'em all pulled and went for dentures with implants for the lower plates.
And then it was determined that since I didn't have any bone involvement, I wouldn't need Zometa. Wouldn't you just know it?
However, I got a great smile out of it and y'know what else? No toothaches, it's a LOT easier to take care of my teeth. Just pop 'em in a small plastic case with a Polident fizzy thing. Lot cheaper in the long run, too. Dentists are expensive!
Sorry, went squirrel hunting for a second. Now what was I on about? Oh. Yeah. Now that I am taking Zometa monthly (at least for awhile), I'm glad I don't have to worry about osteonecrosis of the jaw. What other oral surgery can they possibly consider that would trigger it?
For those whose teeth are not healthy, or who are honestly looking at dental surgery soon, that 'talk' between your dentist and your oncologist is vital. My own dentist told me that he wouldn't do anything 'invasive' (like root canals as opposed to simple fillings) for anybody who had a Zometa infusion for at least three months after the infusion, and wouldn't do it if the patient didn't promise not to have another for an additional three months after the procedure.
Five years ago, when I was first diagnosed, my teeth were bad and I had planned to have rather extensive work done on them. It's a genetic thing for me; took very good care of my teeth and went to the dentist four times a year just to keep up with the dental caries. I've had more root canals done than many people have teeth. So I was in a bit of a pickle.
And finally decided that what the hey, I got 'em all pulled and went for dentures with implants for the lower plates.
And then it was determined that since I didn't have any bone involvement, I wouldn't need Zometa. Wouldn't you just know it?
However, I got a great smile out of it and y'know what else? No toothaches, it's a LOT easier to take care of my teeth. Just pop 'em in a small plastic case with a Polident fizzy thing. Lot cheaper in the long run, too. Dentists are expensive!
Sorry, went squirrel hunting for a second. Now what was I on about? Oh. Yeah. Now that I am taking Zometa monthly (at least for awhile), I'm glad I don't have to worry about osteonecrosis of the jaw. What other oral surgery can they possibly consider that would trigger it?
For those whose teeth are not healthy, or who are honestly looking at dental surgery soon, that 'talk' between your dentist and your oncologist is vital. My own dentist told me that he wouldn't do anything 'invasive' (like root canals as opposed to simple fillings) for anybody who had a Zometa infusion for at least three months after the infusion, and wouldn't do it if the patient didn't promise not to have another for an additional three months after the procedure.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Osteonecrosis of the jaw from Zometa - how bad is it?
Hi Dianaiad,
Glad to hear you now have a good set of chompers that you are happy with.
However, I believe that having a full set of dentures doesn't mean that you may not develop ONJ and that you don't have to be on the lookout for it.
As I understand it, one can still get ONJ with dentures. In particular, folks with dentures have to be vigilant to make sure that the dentures themselves aren't causing any soft-tissue irritation over any of the boney areas of one's mouth. Also note that folks with great teeth can develop ONJ through bisphosphonate use.
I know there is a dentist or two on this forum who may be able to weigh in and keep me honest on these points.
Glad to hear you now have a good set of chompers that you are happy with.
However, I believe that having a full set of dentures doesn't mean that you may not develop ONJ and that you don't have to be on the lookout for it.
As I understand it, one can still get ONJ with dentures. In particular, folks with dentures have to be vigilant to make sure that the dentures themselves aren't causing any soft-tissue irritation over any of the boney areas of one's mouth. Also note that folks with great teeth can develop ONJ through bisphosphonate use.
I know there is a dentist or two on this forum who may be able to weigh in and keep me honest on these points.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Osteonecrosis of the jaw from Zometa - how bad is it?
Good catch, Multibilly.
I'm not a dentist, but I also think the key thing that can prompt ONJ is whether there is any injury (or "insult", in medical terms) to the jaw area -- regardless of whether or not one has teeth.
As I understand it, any injury to the jaw can start a cascade of events that can cause blood flow to the area to be cut off, which is what causes the osteonecrosis ("bone death").
I'm not a dentist, but I also think the key thing that can prompt ONJ is whether there is any injury (or "insult", in medical terms) to the jaw area -- regardless of whether or not one has teeth.
As I understand it, any injury to the jaw can start a cascade of events that can cause blood flow to the area to be cut off, which is what causes the osteonecrosis ("bone death").
Re: Osteonecrosis of the jaw from Zometa - how bad is it?
hI Jen and All, please let us know about what happens with the consultation that your brother has about ONJ, Jen. I hope that it is not too bad and that the surgeon can help with that.
There has been an ongoing discussion on the Beacon regarding bisphosphonates and ONJ. I think that this is a situation of having to dodge side effects from one drug in order to try to help with bone damage caused by the myeloma plasma cells. i realized after reading for quite a while that maybe some patients need the bisphosphonates more than others do, but I aim not a doctor. in my case, with damaged bones, I appreciated having the Pamidronate (aredia), which I am sure helped my bones to heal
There is a dental unit at our cancer centre and my teeth were thoroughly checked there, at the time of the transplant, and I keep up with dental work as necessary. My bones are currently checked over with bone density tests and also skeletal X-rays, annually. There is always an element of uncertainty in taking strong treatments meant to deter cancer, I think.
There has been an ongoing discussion on the Beacon regarding bisphosphonates and ONJ. I think that this is a situation of having to dodge side effects from one drug in order to try to help with bone damage caused by the myeloma plasma cells. i realized after reading for quite a while that maybe some patients need the bisphosphonates more than others do, but I aim not a doctor. in my case, with damaged bones, I appreciated having the Pamidronate (aredia), which I am sure helped my bones to heal
There is a dental unit at our cancer centre and my teeth were thoroughly checked there, at the time of the transplant, and I keep up with dental work as necessary. My bones are currently checked over with bone density tests and also skeletal X-rays, annually. There is always an element of uncertainty in taking strong treatments meant to deter cancer, I think.
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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: Osteonecrosis of the jaw from Zometa - how bad is it?
Most of us here know that osteonecrosis of the jaw can be a serious side effect, but a recent journal article drives home just how serious it can be.
The paper is a case report about a woman who, following surgery for breast cancer, underwent infusions of Zometa once every three weeks. She developed a case of osteonecrosis of the jaw that the authors could not tie to any "dental event." The ONJ worsened and, despite aggressive treatment to contain it, the osteonecrosis eventually led to septic shock, and the woman died.
Now, one of the reasons this journal article was published is that ONJ related to Zometa is not usually this severe. Case reports typically focus on unusual treatment or disease outcomes. Thus, such an unusual case should not unduly influence decisions about whether or not to undergo treatment with Zometa or another bisphosphonate, such as Aredia (pamidronate).
The case study does drive home, however, that ONJ should be treated as a potentially very serious side effect.
Here is the reference for the article; note that the full text is publicly available.
Viviano, M, et al, "A case of bisphosphonate-related osteonecrosis of the jaw with a particularly unfavourable course: a case report", Journal of the Korean Association of Oral and Maxillofacial Surgeons, Aug 2017 (abstract and full text; full text at Pubmed Central)
Here is the article abstract:
Bisphosphonates are drugs used to treat osteoclast-mediated bone resorption, including osteoporosis, Paget disease, multiple myeloma, cancer-related osteolysis, and malignant hypercalcemia. The use of these drugs has increased in recent years as have their complications, especially bisphosphonate-related osteonecrosis of the jaw (BRONJ), which more frequently affects the mandible. Here we report a case of BRONJ with a particularly unfavorable course due to cervical inflammation that developed into necrotizing fasciitis, followed by multiorgan involvement leading to septic shock and death.
The paper is a case report about a woman who, following surgery for breast cancer, underwent infusions of Zometa once every three weeks. She developed a case of osteonecrosis of the jaw that the authors could not tie to any "dental event." The ONJ worsened and, despite aggressive treatment to contain it, the osteonecrosis eventually led to septic shock, and the woman died.
Now, one of the reasons this journal article was published is that ONJ related to Zometa is not usually this severe. Case reports typically focus on unusual treatment or disease outcomes. Thus, such an unusual case should not unduly influence decisions about whether or not to undergo treatment with Zometa or another bisphosphonate, such as Aredia (pamidronate).
The case study does drive home, however, that ONJ should be treated as a potentially very serious side effect.
Here is the reference for the article; note that the full text is publicly available.
Viviano, M, et al, "A case of bisphosphonate-related osteonecrosis of the jaw with a particularly unfavourable course: a case report", Journal of the Korean Association of Oral and Maxillofacial Surgeons, Aug 2017 (abstract and full text; full text at Pubmed Central)
Here is the article abstract:
Bisphosphonates are drugs used to treat osteoclast-mediated bone resorption, including osteoporosis, Paget disease, multiple myeloma, cancer-related osteolysis, and malignant hypercalcemia. The use of these drugs has increased in recent years as have their complications, especially bisphosphonate-related osteonecrosis of the jaw (BRONJ), which more frequently affects the mandible. Here we report a case of BRONJ with a particularly unfavorable course due to cervical inflammation that developed into necrotizing fasciitis, followed by multiorgan involvement leading to septic shock and death.
Re: Osteonecrosis of the jaw from Zometa - how bad is it?
In reference to osteonecrosis of the jaw (ONJ), I had it for over two years ago. I suffered for two years because no one knew what I was dealing with. Personally, I had a large bone growth on my top palette the size of a large almond. It broke through my palette surface and was very painful. I could not eat many things since they would open the lesion wider. I could not eat anything spicy as that would burn the open flesh. My oncologist's education was lacking on the subject of ONJ. But did know it is caused by bisphosphonates.
My ONJ was located on my top palette way in the rear of my throat. So at first they though I had some ear, nose and throat issue. I went to see that type of doctor and he told me in two minutes it was ONJ and they do not treat it.
At the time information was greatly lacking on the subject. I told my oncologists about it and they didn't treat ONJ. They told me to go see a maxillofacial surgeon, which I did. That doctor placed me on doxycycline for three months and mouth washes.
They did seem to slightly heal the ONJ. When the ONJ got worse after the antibiotic's stopped working, I needed to see someone who specialized in treating ONJ. I made an appointment with a specialist:
Here are the facts as I remember them;
The specialist told me it was completely gone and the skin beneath it was healing nicely. I was in shock after two years of suffering. Plus, it happened on my birthday. Thank you God.
I am so happy to be rid of the ONJ and be pain free.
My ONJ was located on my top palette way in the rear of my throat. So at first they though I had some ear, nose and throat issue. I went to see that type of doctor and he told me in two minutes it was ONJ and they do not treat it.
At the time information was greatly lacking on the subject. I told my oncologists about it and they didn't treat ONJ. They told me to go see a maxillofacial surgeon, which I did. That doctor placed me on doxycycline for three months and mouth washes.
They did seem to slightly heal the ONJ. When the ONJ got worse after the antibiotic's stopped working, I needed to see someone who specialized in treating ONJ. I made an appointment with a specialist:
Here are the facts as I remember them;
- When I did have to have dental work done. I did have to stop taking Zometa for three months prior to treatment.
- The dentist should not do any work while I was on bisphosphonates.
- Oral injuries can make ONJ worse and cause infection.
- The treatments include mouth washes, antibiotics, oral cleanliness more often, and constant checks.
- One of the options is hyperbaric chamber treatment, but you can only have Medicare pay for it IF you have had radiation. Otherwise it's quite expensive.
- You can still get ONJ with dentures. ONJ can be on the palette or bone under the teeth.
- It can be very painful and because its in your mouth, it can get infected easily.
The specialist told me it was completely gone and the skin beneath it was healing nicely. I was in shock after two years of suffering. Plus, it happened on my birthday. Thank you God.
I am so happy to be rid of the ONJ and be pain free.
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Anniegetygun
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