Letters From Cancerland: By The Skin Of My Teeth
Back in December and January, while my oncologist was restaging my myeloma and we were discussing courses of treatment, he suddenly said, “And I want you to go see your dentist and ask him whether he sees you having any major dental work done in the next year.”
The calcium levels in my blood were rising. My oncologist intended to start me on a bisphosphonate, such as Aredia (pamidronate) or Zometa (zoledronic acid), as soon as possible to supplement the calcium that was leaching out of my bone. The treatment would be a monthly intravenous infusion. He wanted my dentist’s green light because of the “possibility” of bone loss in the jaw (osteonecrosis of the jawbone).
I saw my dentist a few days later and after checking my mouth and reviewing some x-rays, he said, “I want you to see an endodontist and have a root canal on that back right molar.”
Great.
[A couple of personal dental notes: First, I had a really, really incompetent dentist throughout my childhood and adolescence, so the interior of my mouth is subprime to begin with. Second, because I had such a horrific dentist and had to have the interior of my mouth overhauled when I was young adult, I have really, really good dental hygiene. Still, since the onset of the myeloma, I have had to have several extractions, a situation my dentist suspects is a result of my childhood dentist’s damage and the increased stresses on my body with the advent of the myeloma and its accompanying treatments.]
Three days later I was tilted back in a chair while the endodontist did his job, neatly and professionally. Afterwards, he and I talked about the sudden necessity for a root canal. I explained about my oncologist’s desire to start bisphosphonate treatments as soon as possible.
The endodontist frowned. “Tell me more.”
I gave him a thumbnail overview of my medical back story: the myeloma, the relapse, the increased calcium levels in my blood. He listened and then proceeded to ask me a few questions.
“Have you had any fractures or breaks that are considered the result of the myeloma?”
No.
“Are you showing signs of lesions?”
No.
“When was your last skeletal survey?
Just last month and it came out fine.
“Are there any other extraordinary factors, including hereditary issues, that put you at high risk for bone damage?”
No.
He shook his head.
“If I were you, I would ask the oncologist to postpone the treatment for as long as possible, preferably until it is absolutely medically necessary. I get that oncologists use bisphosphonates for good reasons. But to those of us in the dental world, they are the scourge of the earth.”
To him, osteonecrosis of the jawbone is more than “possible.” In the case of a root canal, he assured me, he has not seen it often. In the case of an extraction, he has seen it often. He said he even had a few patients who had no invasive dental work done and “the bisphosphonate treatments are causing them to lose their jawbones.” His concern with these drugs is the fact that they could impact the jawbone long after the treatment stopped.
The endodontist studied my x-rays, then pointed to the tooth next to the one he had just worked on. “That’s the area I would be worried about in the next year or so. So talk to your oncologist about this stuff.”
When I saw my dentist for a follow-up visit and to get the root canal capped, he and I talked about the bisphosphonate issue in more depth. He echoed the sentiments of the endodontist, adding that researchers are still trying to understand why these drugs affect the jawbone. (Indeed, if you Google “bisphosphonates and “osteonecrosis of the jaw,” you will see links to journal articles puzzling over that very issue.)
I asked the question that was at the back of my mind. “So, let’s say that I get the treatment and I start losing my jawbone due to osteonecrosis. Do I just go through the rest of my life with no jawbone?”
Apparently not. My dentist proceeded to describe a patient of his who was currently having his jaw reconstructed at Ohio State University Hospital. He described inserting a steel plate, then grafting bone onto that, and then …
I don’t know what came next. I stopped listening at “insert a steel plate.”
I saw my oncologist at the end of February, after finishing my first course of Revlimid (lenalidomide). I was ready to raise the issue of the bisphosphonate infusion, as I was scheduled for one that day immediately following the exam. I was going to refuse treatment, something I do not do lightly.
Luckily, I never had to cross that bridge. My labs showed a marked improvement across the board after the first course of Revlimid, and my calcium levels were back in the normal range. My oncologist looked at the numbers and said, “We’re not going ahead with the bisphosphonate infusion then.” I replied without filtering. “Good, because I wasn’t going to take it anyway.”
(An aside: Yes, I got solid lab results with the first round of Revlimid. But I also got mediocre quality of life results. Or, as my oncologist put it, “So you’re getting good results biologically, but not so great results physically.” I am in the middle of round 2 right now, with a lower dosage and a longer break between round 1 and round 2.)
I missed the infusion, or at least a detailed debate of the “necessity” of the infusion, by the skin of my teeth.
And that’s close enough for me.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I have MGUS and my oncologist says that I am low risk. But my dentist told me that I am losing lots of bone in my jaw. Also, even though I am on a medicine that fights autoimmune diseases, my calcium has been rising. Last December it was the same as the last number for the normal range. So, even though I have MGUS, I think I will discuss this with my doctor next time.
Hi April, That is so interesting about your concerns with dental work. Since I started bisphosphonate treatments, which went on for about three years, although at less frequent intervals as time went on, I became quite nervous about the possibility of getting ONJ. I stepped up the flossing routines, and now brush my teeth very frequently! All that concern helped my teeth actually, and it was a positive side benefit.
I was surprised to find out that our cancer centre has its own dental clinic. I was sent there a few times for checkups while undergoing treatments. Now I am back to my regular dentist though, who I have known for decades. He just warned me that if I go back on treatments, he may check my teeth four times a year, instead of twice a year, since his experience is that cancer patients can get a 'dry mouth'. This lack of saliva (I think) can cause acidic attack of the dental enamel. I am fortunate to have such a concerned dentist!
Glad to hear that your treatments were working well for you too!
I too refused the bisphosphonates due to ONJ [osteonecrosis of the jaw]. I read that taking magnesium supplements helps keep the calcium in the bones, so I started on magnesium, and vitamin D supplementation and amazingly the calcium levels in my blood went back into the normal range. Since this supplementation I have had no bone de-calcification evidence either by blood tests or bone scans.
Even after 2 years of remission and my M protein marker starting to rise again, I have had no hyper calcium issues. I am now taking Revlimid and dex, with my magnesium and Vit D supplementation, with calcium levels normal.
Does anyone out there actually know what the incidence of the ONJ is...what % chance of developing it...and how how you monitor for it..I'm on Zometa infusions once a month currently while going thru induction with CyBodD...I would like to discuss this with my oncologist very soon...we are just now discussing my ASCT coming up soon
Excellent column, April. Before I started bisphosphonate treatment at the NIH for my clinical trial, I had to have an impacted wisdom tooth extracted. I am also light chain only which tends to hit the kidneys. Bisphosphonates can cause both kidney and ONJ issues. Based on the results of the large Nordic Myeloma Study Group's clinical trial in Scandinavia, I was put on reduced pamidronate (Aredia) at 30mg per dose rather than the usual 90mg. The study showed that the reduced dose was just as good if not better than the much larger dose with greatly reduced incidences of ONJ and kidney failure (i.e. less is more). I chose pamidronate because I felt it would be easier on my kidneys than Zometa. This may be an option for patients concerned with ONJ and kidney issues. All the best. Terry L.
I was on Zometa monthly for 2 years. Then had a ASCT and developed severe mucositis and could not brush my teeth for 5 weeks. When I returned home, I needed 5 root canals. I was off Zometa for 6 months before the root canals. I had to have all 5 teeth ground down to the gumline because extractions were not an option because of the ONJ possibility. Since then, I am on Zometa every 3 months. I have had no problems.
Hi April - Good discussion on bisphosphonates and ONJ. I was diagnosed in my early fifties with osteopenia and placed on Boniva that increased bone density. However, later I lost a bottom front tooth and had to have an implant. The oral surgeon said the bone density drugs I was taking caused lack of circulation in the mandible and highly recommended not taking bone density drugs. He felt if I continued with Boniva, I would lose more teeth. I stopped taking it.
When diagnosed with MGUS 2.5 years ago, my endocrinologist wanted me back on Boniva to protect my bones, but am not taking it. My oncologist said I had no lesions from the scans and recommended calcium, Vit D, and magnesium, along with daily exercise.
How odd you mentioned the Ohio State University Hospital and jaw reconstruction. My oldest son was born with a facial anomaly and has had two jaw reconstructions that didn't work. His team surgeons have recommended going to Ohio because of all the innovative (vascular graft flaps) reconstruction work they are doing with mandibles at various hospitals. We are waiting for approval to visit the CCH team soon.
Diane
I'm a dentist with mm and I've researched Zometa as much as I could and still don't have the answer.
Coach, have you refused to use bisphosphonates?
Andrew beat me to the question: I'm curious whether Coach has had bisphosphonate treatment also!
I've seen no statistics on ONJ and bisphosphonate treatment. What my dentist and the endodontist said was that should I start such treatment, I should increase my regular checkups to monitor any changes in my mouth.
Per Nancy's comment about dry mouth, I have had to live with that since my stem cell transplants in 2005. When I see my dentist, I always have the same hygienist as she is familiar with my dry mouth and with my medical history. I hate the dry mouth, but try to stay on top of it as best I can. I carry water everywhere, among other things.
All this dental talk has made me acutely aware that I need to go drink some water!
I have multiple lytic lesions in my back, so I reluctantly took Zometa for one year. With no proof that it benefitted me (and no apparent side effects), I decided it was not worth the risk to continue it.
Coach Hoke
This is interesting. I have been on Aredia for 5 years but, for the last 3, just once every 3 months. I have not had any of the jaw issues that I have read about. I get my teeth cleaned every 3 months and have xrays done annually. I have not had any teeth pulled. My dentist has not mentioned any issues with my teeth or jaw.
I have been told that Aredia is less likely to cause ONJ than Zometa and that it has less overall side effects. However, it has less anti-melyoma properties and many oncologist for that reason have moved to Zometa. Aredia has a longer infusion period and that seems to be one of the reasons for less side effects.
Ron
Here is an article that was published in "Hematology" about Biophosphonate Complications including ONJ.
http://asheducationbook.hematologylibrary.org/content/2006/1/356.long
Here is an exerpt:
"Durie and colleagues conducted a web-based survey. Of the 904 respondents with the diagnosis of myeloma, 62 patients had the diagnosis of ONJ and an additional 54 patients had suspicious findings. Of the patients with myeloma, 71% had received zoledronic acid, and 29% had received only pamidronate. The 36-month estimate of osteonecrosis or suspicious findings did not differ in this series between patients with myeloma and breast cancer. Additionally, no other concomitant treatment with thalidomide or corticosteroids conferred an additional risk. At 36 months censure of data, ONJ was noted to develop in 10% of patients receiving zoledronic acid, compared with 4% of patients receiving pamidronate. In this series, the mean time to the onset of ONJ among patients receiving zoledronic acid was 18 months, as compared with 6 years for patients receiving pamidronate."
It would appear that Zometa carries a much higher risk of developing ONJ than Aredia based on this.
Ron
Ron - As far as I know, there has never been a head-to-head comparison to see if Zometa has more anti-myeloma activity than Aredia.
In addition, the claim that Zometa has anti-myeloma activity is based on the fact that it improved survival in a UK study where one group of patients took Zometa in addition to other myeloma therapies, while the other group took another (weaker) bisphosphonate that isn't even approved in the U.S. The patients who were on Zometa had fewer fractures, and longer overall survival, than those who took the other bisphosphonate. But this is the only "proof" so far that Zometa has "anti-myeloma" activity.
I know that a lot of physicians have bought into the notion that Zometa is the "better" bisphosphonate, and that it has anti-myeloma activity. But I also think the evidence for these conclusions is indirect, at best, and that the impressions have been created in part through substantial marketing.
Remember, Aredia has been generic for maybe 10 years, or even longer,and the claims about Zometa being "better" were put out there and marketed heavily when Zometa was still patent protected and making a lot of money for the company selling it.
I tried Zometa first and had serious side effects so switched to Aredia. My doctor said they are equally effective but the hospital prefers that the doctors order Zometa because the shorter infusion time means that they turn over the rooms more quickly and serve more patients.
I have received Zometa infusions monthly for about 2.5 years, with a break of 9 months, and now am receiving it every 2 months. I had a fractured vertebra, a hole in my sternum, and worrisome bone strength issues for remaining vertebrae when I started treatment. I had NO side effects during the first 12 to 18 months. As my bone strength improved, I began to have side effects that lasted about 2 days.
My bone density has greatly improved. I took a break last year to have some dental work done. I talked with the endodontist also. He was quite familiar with Zometa, but his only worry was a possible extraction. So I stayed off the Zometa until we were finished with treatment and a 6-month checkup.
I have less side effects with every-other-month infusions. I was 55 when we started, and the strength of my skeletal system is extremely important to me. I am happy to receive Zometa. In my reading of recent clinical studies in Stage 4 breast cancer also indicate bisphosphonates were helpful in improving bone health and preventing a return invasion.
My skeletal system continues to improve, and my various doctors all watch different markers. I am quite thankful that I am receiving Zometa, and I am also thankful that my body tolerates is so well. My girlfriend's often repeated advice: You cannot complain about anything you have not tried. Your situation requires some degree of risk in treatment. You have to be open minded and consider the options your doctor offers you. He makes recommendations based on your best interests, and he/she wants the best possible recovery for you. I am thankful for the approach that has been taken.
The Beacon is currently conducting a Weekly Poll on the subject of osteonecrosis of the jaw in myeloma patients who have taken bisphosphonates. You can participate in the poll, which consists of a single question, by going to this link:
http://www.myelomabeacon.com/forum/weekly-poll-bisphosphonates-osteonecrosis-of-the-jaw-2014-t3044.html
The poll will close this Wednesday evening.
Also, you can view results of a similar poll that was conducted two years ago by going to this link:
http://www.myelomabeacon.com/forum/weekly-poll-bisphosphonates-osteonecrosis-of-the-jaw-2012-t999.html