“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 ^[1] (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 ^[2].

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.