So here we are, with a new disease to fear (Bisphosphonate-induced Osteonecrosis of the Jaw (BONJ), if you missed my last post.)
FL has convinced himself that he "definitely has it" and was refusing to go back to the dentist before his scheduled appointment next week. But I like to get to the bottom of things and have been using my work-related online access to academic journals to do some research. As I am not a medic myself, most of it is a sea of meaningless words with Greek or Latin roots. FL is a classical scholar and understood "osteo" (bone) and "necrosis" (death).
It amuses me to think that someone somewhere is seeing a sudden unexplained rise in accessions to their rather esoteric journal from my institution. Hee! But I digress.
I found an excellent article (Badros, reported here) on a study of 22 patients with Multiple Myeloma who developed BONJ. It is clearly-written and gives a good over-view. For once, I understood what I was reading! But as usual the important stuff is masked by polite language. I wanted to know what it means for FL if he has this condition, and I was getting nowhere.
So I tried another tactic. I found an article on the history of ONJ. If you are of a tender disposition I suggest you do NOT google the words "phossy jaw". In particular, I recommend you avoid the images.
Because ONJ used to be known as "phossy jaw" and was famous as one of the hideous conditions suffered by workers in Victorian factories - match-making factories to be precise. Vapour from the phosphorous (phossy, bis PHOSphonate) used to make the tips of matches got into the jaw bones of factory workers, causing pain, deformity and eventual death. A large percentage of deaths were reported to be due to suicide to escape the unremitting pain. Concern about the disease was one of the factors in the London match-girls' strike of 1888. You can read about that here (no scary pictures, I promise!).
The good news is that we now have antibiotics. Woo hoo! And we have pain-killers. Woo hoo!
The bad news is: even nowadays, if you get it, it will eventually kill you. Not on its own, but because of all the other factors that accompany it. Like: not being able to eat solid food, significant levels of pain, the psychological impact of serious facial deformity as your bones rot, brain damage, and of course not being able to take the bone-strengthening drugs which you were taking to combat the Myeloma means that you are at greater risk of dying of the cancer itself.
This is the kind of information you don't get from doctors. And while I would not want anyone to show FL the pictures or even the words I have found online, I do think that those in charge of promoting the prevention of BONJ need to take their job a little more seriously. Scare the dentists into understanding the condition, not just because they might get sued (not by us, I must say) but because this is a truly horrific way to die, worthy of a sensationalist Victorian melodrama.
FL is going to the dentist today for an x-ray.*
*Edited at noon: Just received text from FL: his dentist is sending the x-rays to the Dental School. I can't help feeling we could have saved a few days if the Consultant had made this referral on Tuesday, but then again we might still have been waiting for an x-ray appointment. Now we wait.
The Vital Information:
If you have Myeloma and are being treated with bisphosphonates (Zometa by infusion or a daily pill such as Pamidronate) it is ESSENTIAL that you tell your dentist and that they consult your oncologist before carrying out any sort of dental procedure.
They MUST NOT extract any teeth unless there is no alternative, and they should then do so only under the supervision of a specialist Oral and Maxillofacial Surgeon.
If in doubt, go straight to your local Dental School armed with an information leaflet. In Scotland, I recommend this one.