They took an x-ray of FL's jaws and then we were invited in to talk to the dental doctor. He saw "the Assistant" first, who showed us the x-ray, took a history, and asked if he could examine FL's mouth. FL found that rather funny: "That's why I'm here!"
The Assistant told us that there is a small area of exposed bone at the site of one of his most recent extractions. I asked if it was "dead bone", but he did not answer me directly, replying that it was "very small". He also identified sensitivity in FL's left canine (a rather lonely tooth since its neighbours on either side were extracted 2 months ago).
Then he called the Consultant in. The Assistant "presented" FL in the best Doctor In The House style: "The patient is a 76 year old man with multiple myeloma, referred due to bisphosphonate-associated osteonecrosis of the jaw, following extractions by a community dentist. He is otherwise fit and healthy." I am afraid both FL and I laughed: "otherwise fit and healthy"! Snort!
The Consultant saw the joke. The poor Assistant was so nervous I am not sure he realised the irony of what he had just said: this man has an incurable form of cancer and his jaw is dying, but apart from that he's fine!
The Consultant looked at the x-ray and then "percussed the canine" (ow!). He said that it could take 4 - 6 weeks for an infection to show itself in the x-ray, so at present it is not clear why FL's tooth is so tender... however, he noticed a possible fracture to FL's upper jaw, running directly above the tooth in question. The Assistant hadn't spotted that. The extraction sites have not healed, but he thought they were showing signs that they might. All in all, he said that FL's mouth was looking a lot better than he might have expected from the x-ray.
He advised FL to perform "scrupulous oral hygiene". If he currently brushes his teeth twice a day, increase it to four times a day, and use an alcohol-free mouthwash. He needs to keep taking the antibiotics to the end of the course, and there are still signs of oral thrush, so he needs to continue treatment for that.
There is no cure for osteonecrosis of the jaw. The Consultant explained that there is no proven treatment, as it is quite a new disease, only arising in the last ten years since bisphosphonate therapy became commonplace for bone cancers. He then corrected himself to chuckle that of course in Victorian times, it was people in match factories who got this! "Phossy jaw?" I asked. He gave me a quick and serious look: "Yes. Phossy jaw."
So we have a diagnosis. And we have a plan. FL will return in 6 weeks for a review, to check that the dodgy canine is behaving itself. The Consultant was very clear that we should contact him immediately if there is any problem before then, and that he is now "in control". Those were the words he used. Good, strong words. Someone is "in control". We like that.
I explained that the Haematology consultant needed to know whether or not to recommence FL's Zometa infusions, and that the decision was going to depend on whether or not the Maxillofacial Unit had found "dead bone". The Consultant said that was a very difficult decision to make. He would think about it, hard, and write to Haematology in time for FL's appointment next Friday. And he asked the Assistant to leave a note on his desk to remind him to do this as a priority on Monday.
So there you have it. Phossy jaw. Never a dull moment, eh?
16 comments:
What could I possibly say to make it any better? Sorry is such a hollow word sometimes. I too like the confidence of the consultant and I would imagine all things considered that Zometa might not be such a great idea. I say that in the knowledge that Mike is not on any bone strengthener at all.
That "doctor in the house" talk can be rough--so depersonalizing. As bad as this sounds, it does seem as if it is being taken very seriously by someone knowledgeable. Luckily this Victorian disease can be treated with modern medicine. Strangely, sometimes a diagnosis and a plan is better that plain worry. (P.S. That reversible cable looks So lush.)
Sincerely hope you have a nice weekend.
When I was diagnosed with ONJ a year ago, I went off bisphosphonates (sp?) for about six months while I was treated with antibiotics and mouthwash. Since then everything has cleared up and I am now receiving infusions every three months. So far so good. But I probably need to floss more often so I don't start glowing or "phossing." hope everything works out, Kris
Never indeed! But you guys can still laugh. You have a diagnosis, a plan, and someone in control. And some very nice cables. I suppose it could be worse. Will be thinking of you both x
I cannot fathom how you must feel... Each long day enduring the weariness of another weight upon your heart. Yet, you smile, knit, work and knit and love the Girl, the Boy and FL. You share your strength with us that we may smile in your grace.
I don't know what power lies in the abundant love and blessings dispatched to you and FL from all corners, but it must be akin to that which comes from you. If so, may you find the bright filament of peace in your days and feel the presence of friends about you.
TO ROO AND FL,
THE ABOVE MISSIVE IS SO BEAUTIFUL, I FEEL I COULDN'T POSSIBLY CONJURE ANYTHING TO FURTHER IT. EXCEPT THAT I AM RELIEVED FOR YOU THAT YOU FINALLY HAVE SOME ANSWERS, SOME INTERVENTIONS TO TAKE, AND SOMEONE WHO IS GIVING YOU SUPPORT AND ASSURANCE THAT HE'S "ON THE CASE". HUGE STEPS IN THE RIGHT DIRECTION. I AGREE THAT PERHAPS ZOMETA WOULD BE BEST LEFT OUT OF THE PICTURE FOR NOW - IT STAYS IN ONE'S SYSTEM FOR YEARS! BUT, I AM NOT A DOCTOR, JUST AN MM CG OF A MAN THAT HAS TERRIBLE TEETH TO BEGIN WITH, AND IS ALWAYS CONCERNED WHETHER THE SHOE WILL DROP FOR HIM, TOO. ROO, DO ALL YOU CAN TO TAKE GOOD CARE OF YOURSELF - THIS STRESS MUST HAVE FELT SO HEAVY, AND FOR QUITE A WHILE. WARM HUGS, KAREN
Ah, crud. I am sorry to hear about that. I was hoping for better news. At least it sounds like you've got someone competent (or at least attentive) on the case now.
Not good news but like others have said at least there is someone on the case. Hugs from me too xx
I have been following a while now (via both Jellybean and Fiona at Stitchthisdarling), but am finally dropping in to leave a comment...
The other commenters are right - it does sound as though you are (finally) in the hands of somebody competant. At least you can still laugh - as I'm sure you know, that's a very potent medicine in itself :-)
Oy, it's always something, though I'm glad to hear it's not worse. Hoping Fl's mouth heals quickly enough to enjoy Christmas dinner!
And I would add a big NO on the Zometa. His bones have had many treatments to help them strengthen. Right now, it could do more harm than good.
Bollocks. Sorry if this offends anyone but it is the first thing that came to mind.
:-(
I hope very much that the dental regime, antibiotics etc. work out.
Gx
Roo, I am so glad you and FL can still laugh through these trying times. It's good that you now have someone who is quite serious about your case...its sometimes hard to find that in the NHS.
I was too horrified when I first read this post to comment - but I'm heartened by Kristine's comment, and I'm so glad you are feeling that this doctor knows what he's doing, and that FL is feeling a bit better. Keep laughing when you can! It's good medicine as well.
Kristine - so helpful to have your comment a year after diagnosis. Thank you!
Gabrielle - that is exactly the word I used! ;)
Everyone - thank you for your kind words!
In spite of - or maybe- because of---I hope you and FL and the Girl and The Boy and all included in your circle have a really wonderful Christmas. Just being together, connected.
Here's a bit of a laugh for you and FL--I hope. These stream of consciousness forms filled out by doctors----last summer I had occasion to visit the orthopedist a few times about the knees which seems to be falling apart. One visit I asked for some notes about my condition, etc.-- the doctor's (well, P.A.) notes began " The patient is a well nourished woman of ----." I read it to my husband and said,"What does that sound like to you. I think it sounds like he thinks I am fat." Husband agreed. I don't really care because I am on the small side- chesty, but small, hourglass I think it's called. (Actually I didn't really care ten or maybe twenty years ago when I wore maybe 2 sizes larger) It's is just funny the way these doctors write up the notes.
I think of you all everyday.
Linda
Linda - I love that description! Definitely better than "malnourished"! ;)
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