Myeloma Lessons: Some Risks Are Not Worth Taking
The decisions that we must make as cancer patients are all about risk versus reward. If we are told that, without a recommended treatment, we will surely die, then the choice is pretty easy, almost regardless of the risk.
But the decisions that we face are rarely so easy.
Among patients and caregivers, the most hotly debated myeloma treatment decision is whether or not to undergo a stem cell transplant. There are numerous articles on the topic, and the question is the subject of many discussion threads in the Beacon's forum. At the end of the day, reasonable minds can differ.
One myeloma subject that was not controversial, at least to me, when I was starting with my myeloma treatment was the use of bisphosphonates such as Zometa (zoledronic acid) and Aredia (pamidronate). It was presented to me by my oncologist as unquestionably the thing to do. Bisphosphonate treatment is part of what we call “the standard of care,” as highlighted by its inclusion in several different treatment guidelines for newly diagnosed multiple myeloma patients (see related Beacon news article).
I was aware of the risk of developing osteonecrosis of the jaw (ONJ) from the use of bisphosphonates, but the potential benefits seemed to be great, and the risk of ONJ very small.
As I wrote in my column back in May of last year, I did develop ONJ. I have seen pictures of, and read about, serious cases of ONJ. This can be a particularly gruesome affliction, producing mouth lesions that will not heal, and a jaw bone that appears to be coming apart. In my case, we caught it very early. All I had was a tiny piece of bone that came through the surface of my gum. Once the bone sliver came out, the gum healed quickly and completely.
At that point, I felt that we had beaten the ONJ monster and my worries were over.
When I went to my oral surgeon last fall for a follow-up appointment, I mentioned pain that I had been having in a tooth that had a root canal and a crown. The surgeon did x-rays and told me that there was significant infection under the tooth and, because it was cracked below the gum line, it would have to come out. He believed that, since my gum had healed so well after the piece of bone had come out, it would not be too risky to do the extraction. To aid the healing, he would inject platelet-rich plasma into the gum.
At this point, I was under the impression that, if the extraction site healed as well as the site from which bone had come out, we would proceed to the next logical step – an implant. In fact, when I saw the oral surgeon two weeks post-extraction, I could have sworn that he said that, if it were not for my history of ONJ, he would schedule the implant procedure immediately, but in this case he wanted to wait another month to see how the healing progressed.
When I went for the follow-up appointment a month later, he examined the gum and pronounced the healing to be “Perfect!” But what he said next was a complete surprise: He wanted our next appointment be in one year!
When I asked about the implant, he said that, given my history and my use of intravenous bisphosphonates for 18 months, he would not consider an implant under any circumstances.
I was speechless at first – which is saying something, as I am rarely at a loss for words.
After regaining my voice, I pushed back, arguing that if an extraction was appropriate, an implant was not any riskier.
My oral surgeon is generally fairly aggressive. But, in this case, he was adamant. He would not do an implant.
Before having the extraction, I had familiarized myself with the American Association of Oral and Maxillofacial Surgeons' position paper on medication-related osteonecrosis of the jaw. I suppose I didn’t fully appreciate the risk of going forward with an implant.
I did some further research on the issue and I was surprised by the seemingly uniform conclusion that implants are very risky for those who have been exposed to bisphosphonate therapy. Many of the studies and reports deal only with oral bisphosphonates, which are viewed as somewhat less risky than bisphosphonates administered intravenously. But the risk associated with an implant is considered to be significant, even if the patient has not previously been diagnosed with ONJ.
I have heard of recommendations that patients on bisphosphonates who require oral surgery take a one- to three-month bisphosphonate drug holiday before scheduling oral surgery. In my case, this might have provided a basis for going forward with an implant after a waiting period. But the position paper I mentioned earlier concludes that the efficacy of such a drug holiday is unproven. This makes some sense since, as my oral surgeon explained, the half-life of bisphosphonates can be up to 14 years! That stuff really hangs on.
Clearly, tempting fate is not worth the risk.
So here I am with an unexpected gap in my mouth. It is near the back, so really only noticeable if you know that it is there. I could get a bridge, but that would require that one of the teeth next to the gap – which is perfectly healthy, never having been drilled or capped – be ground down to support the bridge.
For now, I am doing nothing, trying to come to terms with yet another unexpected twist in the road. I am approaching it with a smile – just not one broad enough to reveal the gap!
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Andrew,
My husband, who does not have myeloma, had a next-to-last molar removed for much the same problem. He decided to leave it alone and use a flapper tooth to keep the space open so he could decide later about replacing it permanently. He only wears the spacer at night occasionally, and that seems to do the trick. His gap doesn't show either.
Pain in the neck, but I'd leave it alone if I were you. But I'm not, so ...
Good luck!
Julia Munson
I had to have a tooth removed near the back 2 years after I started on 4x yearly Zometa infusions. I did nothing about the "gap" for 3 more years, as, like yours, it was unnoticeable. However eventually my dentist suggested a permanent bridge, as he was concerned that the tooth on the bottom below the gap would begin to cause problems. Apparently, not having a matching tooth when chewing can be problematic. I got the bridge and am very pleased with it. It's really a 3-tooth cap with a fake tooth attached in the middle that is cemented over the 2 supporting teeth. And my lower tooth now has a "chewing partner" again!
Andrew - You and I have had this conversation, and you know I am not a fan of bisphosphonates. However, even as smart as I keep telling you I am, I did not know the longer-term repercussions; it must be in the really small print listing the side effects.
Talk to you soon,
Don Hoke
Just got back from Sloan Kettering dentist, who sees ONJ all day. Fortunately have a small area lower jaw 6 months after Zoladex. I've had myeloma 11 years but this was the recent of many. I have a cavity left upper last molar which is not restorable or extractable, as you have seen. We are just putting a filling over it and staying on Biaxin, which gives good coverage for actinomycetes, most common pathogen, as well as Peridex. I'm 72 and don't care what my mouth looks like!
Best,
Robert
Andrew, thanks for the column. So, if you had the decision to make over again, would you choose to undergo the bisphosphonate treatments today?
Aloha Andrew,
How frustrating! I hate when I find out what I needed to know after I needed to know it! It is a perfect example of how hard it is for us patients to get every decision correct.
If you go way back to when you decided to take the bisphosphonate you need to ask yourself if you would have risked the missing tooth. I know I would have said "sure, what's a missing tooth compared to my life?" This answer might vary for each of us, but the lesson for me is to know that there is always the chance of a consequence of every treatment. We need to make these choices as carefully as we can.
That said, I often remind myself that there is an alternative to the discomfort (diarrhea, chemo brain, and fatigue) my treatment causes. It is death. When I think of it that way, I am happy to suffer my minor inconveniences.
Hang in there!
Tom
Well, Daniel, that's a good question. As Don notes above, there are many who question the efficacy of bisphosphonates for myeloma patients (and Don is retired dentist). In my case, my scans after having treatment show no new lesions and what appear to be "healing" lesions. I put that in quotes since the consensus is that the lesions never really heal, but what appears to be healing is tissue which is not as strong as real bone.
And yet my lesion pain, which was terrible at diagnosis, is gone. Did bisphosphonates contribute to the healing and elimination of pain? Who knows, but I think so.
I certainly knew that ONJ was a risk but I did not appreciate the fact that once you took the bisphosphonates, any oral surgery was risky even if you discontinued the treatments for a period of time. I don't know what I would have done if I knew all of this at the outset, but I certainly would have given it more thought.
Just prior to being diagnosed (7 years ago), I had two teeth extractions and posts placed in the gum for implants. Unfortunately, I was diagnosed and started immediate treatment before the teeth were able to be placed. It was a difficult decision to not proceed with that last step, but I did not want to take that chance (despite the bulk of the procedure being paid for). There were still many unknowns. I was considered high risk, and through the many lines of treatment have remained on Zometa. As Andrew said,"tempting fate was not worth the risk" of additional invasive work on the gum.
I read with interest Robert's experience. I live in fear of my teeth requiring additional work, but try to keep regular dentist appointments to head off any problems. Bones are great, by the way.
Interesting column. I was not aware of dentists refusing to do implants for people on bisphosphonates. I have been on Aredia since my diagnosis back in 2009. It is administered through a 2 1/2 hour infusion once every 3 months. Thus far, I have not had any issues with ONJ. However, I have a mouth full of crowns and see the dentist 4 times a year to keep on top of oral issues. I will mention this to him next time I go in.
To all. What is the risk?
I've been on 4 mg Zometa every 6 weeks for 6 months. If I get a implant, what might happen?
1. Implant fall out
2. Implant lead to chronic infection site
3. Implant become source of active myeloma lesion
4. I'll get ONJ
5. I'll get chronic pain at site
6. Daughter becomes a Dead Head and wife gets pregnant?
What is in the fine print that they aren't telling us? Why can't we have invasive oral procedures, or any invasive procedures for that matter?
Andrew, unless Hollywood is calling you for teeth close ups, I would not take the risk for one tooth. My upper and lower caps all came loose and had to be fixed. Doctor would not do any drilling to fix problem as I was on Zometa. My only fix was bridges up and down with temp cement. They are not the best. Who knew myeloma could cause all these other headaches to worry about. It seems to be one thing after another. JOE
Thank you for sharing your story. I had a "low trauma" fibula (lower leg) fracture last year, and already being osteopenic, I was diagnosed with osteoporosis. The workup for secondary causes led to my diagnosis of smoldering multiple myeloma. I presume that sooner or later, treatment for my bone density will be an issue. I have had a lot of dental work (though only a few extractions) and hadn't considered the risk of ONJ very seriously. Sounds like I need to have a good sit down with both my dentist and my internist so I'll know what to do when the time comes.
Andrew, I am not the myeloma patient, my husband is. I have two teeth missing near the back of my mouth and have a partial to fill those two spaces. I do not have a crown on either tooth. It is a very simple partial that slips on to the teeth on either side. I have worn it for years. I do not know the dental terminology for it, but if you are interested I will ask my dentist. --Edwinna
Thank you for your column and bringing up this issue, as it's a current one for me.
I have bone lesions in my limbs (spine, hips are fine), and my induction chemo is going great (bone pain diminished, light chains and ratio normal, IgA normal - after first RVD cycle!). My oncologist wants me to start on Zometa as soon as possible. She did say, that since I've responded so well to therapy, that a few months delay isn't concerning, but I would be getting the monthly infusions for the typical 2-year period.
My issue is that I need an extraction (4th tooth in so very visible) and it is next to a bridge so I would have to have a flipper/flapper/whatever. Yikes! The only other option is an implant, which would take quite a while to accomplish, and what if it ends up failing after I start Zometa? This issue is so concerning. My mouth was rebuilt 10 years ago, and who knows what other issues could arise.
My understanding is that Zometa reduces the risk of fractures by 50% - but are there other benefits? How risky is it to reject Zometa completely?
I'm curious to hear any other arguments against it, Don, as all I hear is the upside (apart from ONJ of course, which is no small matter.)
Hello Andrew,
What a timely article (based on all the comments). Many of us require Zometa or something similar because of myeloma's impact on our bones. For four years I've been receiving it every 3 months, and the upside is steady on osteoporosis and bone loss.
Your point is so important in how all of our treatments can impact our oral health. So our oncologist and dentist need to connect about treatment. Sometimes that piece is missing for us.
Thank you for an educational column.
Maureen
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