Myeloma Lessons: This Was A Real Surprise!
“You definitely have ONJ.”
Those were the shocking words that came out of the mouth of my oral surgeon about two months ago. The news that I had osteonecrosis of the jaw (ONJ) was totally unexpected.
Granted, I didn’t just happen to aimlessly wander into an oral surgeon’s office, open my mouth, and ask him what he saw. But I was there to have him rule out ONJ.
Instead, he ruled it in.
But his demeanor and what he said thereafter was equally unexpected. He said that he was not too worried about my condition. He even said that, if my oncologist thought that continuing Aredia (pamidronate) would help my myeloma, he was not opposed to it!
Let me back up and tell you how I arrived at this moment.
Part of my routine treatment since being diagnosed with myeloma was monthly Aredia infusions. As most of you know, Aredia is a bisphosphonate that helps mitigate the bone destruction caused by myeloma. With a few months off while recovering from my stem cell transplant, I had received a total of 18 Aredia infusions. My oncologist normally recommends 24, so I was three quarters of the way to the finish line.
With the increasing use of intravenous bisphosphonates in myeloma patients and people with other diseases, it has become apparent to the medical community that the drugs can have nasty side effects – the nastiest being ONJ.
Osteonecrosis literally means dead bone. When bone dies, it can cause serious problems.
Most of us have read about cases of myeloma patients diagnosed with ONJ. Portions of the bone in the jaw become exposed and, because the blood supply to the bone is interrupted, the bone can die and become loose. Nearby teeth can loosen.
One of the real difficulties with this condition is that the lesions many times will not heal, leaving the bone exposed.
All in all, pretty nasty.
Which is why, being the vigilant guy that I am, I was concerned from the beginning of my Aredia treatment about the risk of getting ONJ. I was also somewhat comforted, however, by the fact that I appeared to be at low risk for the condition.
Many of the cases of ONJ are traceable to the use of bisphosphonates coupled with recent tooth extractions, installation of implants, jaw surgery, or other trauma to the jaw. None of those factors were present for me. And I have good oral hygiene. So little to worry about.
Or so I thought.
Then in March I noticed a hard little bump on the inside of my mouth. It was on the bottom, way in the back along the jawbone below the gum line. It was under the skin, hard to the touch, but not painful.
My dentist wasn’t sure what it was, and others had various theories, but none were too concerned.
I made an appointment with an oral surgeon that was about a month away and didn’t worry too much about the bump – at first.
As the days went by, I noticed that the end of the bump became more pointed. It seemed like it would eventually break the skin. And eventually it did. But still no pain.
The break in the skin became wider until I could catch the point of whatever was in there with my fingernail. Being the crazy person that I am, I wiggled at it until it came out.
What appeared was pretty tiny and looked to me like a small piece of tooth. I put it in a small plastic bag to show the doctor. The area from which it came did not appear to be very large and started healing quickly.
So, at this point, it did not seem to me to be a case of serious ONJ. Perhaps it was, as a retired dentist friend suggested, a leftover bit of wisdom tooth root that had finally worked its way out.
Although I was not about to cancel my oral surgeon appointment, I was pretty confident that there was no issue.
I should also add that, before visiting the oral surgeon, I had a 3-D CT scan of my jaw ordered by my oncologist, and a panoramic x-ray at my dentist’s office. Neither apparently showed ONJ.
When I arrived at the oral surgeon’s office, the first thing that they did was their own 3-D panoramic x-ray. I then was examined by the oral surgeon. It did not take him long to arrive at the dreaded diagnosis. I showed him the white thing in the plastic bag, and he said it was bone, not a piece of tooth.
Not much surprises me anymore, but I was nonplussed.
Yet I was clear that this ONJ was at an extremely early stage. No loose teeth, no exposed bone, the lesion was clearly healing, and I had no bone pain. The treatment prescribed was anti-bacterial oral rinse and prophylactic penicillin, with the objective of preventing infection at all costs.
This course of treatment is consistent with a 2014 update to the recommendations of the American Association of Oral and Maxillofacial Surgeons, as outlined in this journal article.
I was not thrilled with the idea of taking antibiotics around the clock indefinitely and using a mouth rinse that seriously stains the teeth, but I agreed with the plan.
In the meantime, I had another small bump like the first one just above and behind it. When I went back to the oral surgeon for a one month check-in, he was not overly concerned. The first area was 99.9% healed, and if another tiny piece comes out, we will try our best to prevent an infection.
As a footnote to all of this, when I told my oncologist about the ONJ diagnosis, he was adamant that I not continue the Aredia. Believe me, I was not going to do it regardless of what he said.
So, at the end of the day, vigilance once again appears to have paid off in at least hopefully minimizing damage. Bisphosphonates, however, stay in your bones for a very long time. It has been estimated that they have a half-life in the bones of up to 10 years.
Looks like I have quite a while to wait before I know the ultimate impact.
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 .
Thanks for the excellent column, Andrew. It was very informative about the early stages of ONJ. I also took Aredia for a set period of time, over three years, and my bones have healed quite a bit since diagnosis, according to skeletal surveys. (I had many lesions, some of which have healed over, and others which are stable.) Also, panoramic dental X-rays were done for me at the cancer centre dental clinic before the auto stem cell transplant.
When I inquired about taking a longer treatment of Aredia than what is recommended, I was told that I had reached the maximum amount of treatments. (I think that, if I was getting new bone damage, that would be up for debate though.) Hope that the problem is halted now for you. What is the name of the oral dental rinse that causes teeth to be stained?
Thanks, Andrew, for the interesting column. Did the ONJ show up in either of the panoramic X-rays?
Nancy - The rinse is chlorhexidine.
Ginny - The ONJ did not really show on the x-rays; you could see small bumps, which was extra bone, but nothing too dramatic.
Thank you, Andrew, so much for writing about your experience. You gave very important information for those of us on bone med.
After three years of monthly infusions of zoledronic acid (Zometa), I developed almost identical symptoms. We stopped the bisphosphonate infusions a year ago, and a subsequent 3-D tomography reveals improvement in the necrosis of the jawbone after one year. I no longer require the antibiotics, but continue with the antibiotic rinse. The small lesions have yet to heal completely. Fortunately, as with Andrew, we caught this early enough to avoid major problems thus far.
Patients on bisphosphonates need to be vigilant with regard to their oral health!
This has been my biggest fear ... developing ONJ! I have very good dental hygiene, even my regular dentist told me not to worry too much. But after your post, it brings my fears to the forefront again.
After my diagnosis in December 2014, I was entered into a clinical trial at the Vanderbilt Cancer Center. I have had 4 rounds of Zometa to date. SCT will be after this last round of Velcade, dex, and Revlimid. I'm wondering if I could refuse the Zometa after the SCT? Thoughts?
Andrew - Thanks for another great column, which was very informative on a topic I have not seen discussed here much. I had monthly Zometa treatments during my induction therapy, but my oncologist stopped the treatments after my ASCT. I have a long history of dental problems and had to postpone some work during induction therapy. After reading your column, I am glad I am no longer receiving that treatment.
Richard - What you report is encouraging.
Linda - Your question is difficult to answer. It may depend on the condition of your bones. If your lesions are not too large, widespread, or painful, then perhaps refusing the Zometa might make sense. ONJ, although more common with those using bisphosphonates, is still relatively rare. As with all the choices that we have to make, there is no easy answer.
Andrew, thank you for your response to my question. You are correct about all decisions being difficult. You asked about the condition of my bones. At this time, I only have one lesion with no bone pain. I have osteoarthritis and am used to the pain with this condition. That is why I feel confident that, after the SCT, I will not take any further Zometa treatments.
Best of luck to you with your healing!!
Andrew thank you for the ONJ insight. I decided against using bisphosphonates over the recommendation of my oncologist. Why? Statistically, ONJ is very rare. However, of the 3 MM patients seeing my pain management doctor, 2 developed ONJ. One did not, and that was me. So much for statistics.
I went the nutrition route and concentrated on a regimen of all the vitamins, minerals, and exercise necessary to build bones and keep them strong. This is not a trivial exercise, because our normal North American healthy diet is not bone builder friendly, especially for someone with bone thinning issues.
This technique works, as bone scans have shown healing in MM damaged areas and good bone density.
I have been through 2 MM treatment regimens, VMP and Revlimid / dex, which is ongoing. No bone issues in over 4 years, with no bisphosphonates and no SCT.
I feel the nutrition route focus on bone building was the right choice for me.
Thanks again for bravely touching on this touchy issue.
I had not heard a description of ONJ at early stages like this. This was very informative. Best wishes and hope you have put this behind you.
Eric
My husband developed ONJ in two places after 2+ years on Zometa. Rich always had periodontal disease but we found a great periodontist in NY who also has a doctorate in oncology. A rare combination indeed. Treatment included debridement of the bone, antibiotics, and antibiotic mouth rinse for months. Pureed foods until substantial healing, then soft foods. No hard chews. Now just rinsing with Epsom salt and peroxide and good oral hygiene.
Andrew, I too suffered from ONJ in a very similar pattern as you did. Starting from a piece of my jawbone coming out. My dentist didn't know what it was, but sent me to an oral surgeon who diagnosed it after he found out I was on Zometa for my MM.
He in turn sent me to a wonderful periodontist who treated my jaw successfully with laser treatments to the jaw. After several months of treatments, I was successful in healing of my jaw.
I don't know if the laser treatments did the trick or just time healing, but now I'm a firm believer in laser treatments.
Andrew, a couple of times in my 30s and 40s I had the same experience you had of a small piece of bone working its way through the gum (in my case, almost always lower jaw). I had no medical conditions at the time. It probably hasn't happened now in 20 years (I'm 61), and about 18 months ago I was diagnosed with MM and have been on Zometa ever since. Right now I have a hard bulge at about 1 o'clock, lower right jaw, about an inch below my gum line. No other issues, and I see a dentist regularly who keeps an eye on such things, especially since my MM diagnosis.
Anyway, all that was so say this: earlier in my adulthood I had the same small conical chip of bone work its way through (at least twice), and well before my MM diagnosis and separate of any ONJ possibility. I'm no doctor, but the chip situation might not be directly related to MM nor ONJ, though it certainly is not normal, and perhaps led to your getting a quicker confirmation of ONJ.
Thanks for the informative column, Andrew. This is very good information since many of us are on bisphosphonates.
Best wishes to you in your continuing recovery from ONJ.
I had a very similar experience. Was on Zometa before and after stem cell transplant. Developed bad toothache. Had tooth extracted August 2014. Was diagnosed with ONJ November 2014. Stopped Zometa, took antibiotics and oral rinse. To date, the area where bone was exposed is healing slowly!
It is interesting to read about so many having similar experiences. More importantly, it is encouraging to me to see how several of you have successfully treated the problem. Hoping for a good outcome here as well.
Hi Andrew, I have exactly the same thing. Unfortunately I had to have two teeth extracted in Preparation for my ASCT. This little bur started to show up before around the tooth which had an old and leaky root canal. Sounds like we need to share our experiences. My acupuncturist thinks he can help by adding energy and blood flow into the area. I also think Reiki may help. Is it upper or lower ? My oral surgeon thinks upper is not as big a problem because it gets more blood flow..
Are you familiar with the latest paper on this topic pubished in 2014 by by the Association of oral Surgeons? I will send link later.
Hi Paul--Happy to discuss this further. The link to the paper you mention is in the article.
Andrew, Thanks for taking the time to share your experience. My wife has had similar initial symptoms to yours. I shared this information with her and she setup an appointment with an oral surgeon for a x-ray.
When the doctor shared the possibility of a "rare" chance of ONJ, the did not share that "rare" equaled 5-10% of the population taking Zometa.
Andrew, I too had this situation occur. For me I was given Zometa but was not informed of the side effects, especially ONJ. I had no bone lesions and only mild osteopenia. I had a tooth where the root broke and my wonderful dentist very carefully removed it. During the healing process I noticed the chips. I thought these were some bone chips from the extraction but when my dentist saw them he felt it was ONJ and sent me to a specialist who confirmed the diagnosis. Immediately stopped the Zometa The specialist considered it healed after my 2nd visit. It is now 3 1/2 years and still have some chips appearing. This is due to another tooth that needs a root canal but am afraid of having another flare up. These has to be an alternative to this type of medication. Oncologist and Dentist need to come together to solve or re-evaluate this treatment. Good luck to you.
Dear Mr. Gordon,
We love hearing your stories from you. Have not heard from you for over a month. Do post your next article soon!
Wishes and regards,
Upasana
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