Today FL went back to the hospital for his regular check-up. We got the Big Cheese.
She said she had decided to reintroduce steroids alongside his Revlimid, as research seemed conclusive that the benefits outweighed the risks, as long as FL avoids infection and "stays well". She checked his chest (fine) and went through a checklist of other possible side-effects of Revlimid, and declared him fit enough to proceed.
She did not tell us the results of his latest Freelite test, other than to say his numbers are "steady". For the first time, she issued a warning that if he is taken off Revlimid mid-cycle, he must return the leftover drugs to the hospital. She said that if his numbers increase, he will be taken off the drug immediately. Reading between the lines, I think FL's time on Revlimid may be limited. But she did not ask for another Freelite test to be done today, so he is "safe" for another two months at least.
She asked if there was anything else, and I said "You need to tell her about your teeth". FL was puzzled. He views teeth as being for dentists, not doctors, but I had a lurking worry in the back of my head that he was not supposed to undertake invasive dental treatment without consulting the doctor. So he explained that he had had a couple of extractions done a few weeks back and the neighbouring teeth now appeared to be abscessing...
The Consultant was on to him like a hound on a hare. "Did you come up to the Dental School for the work?" Um... no, the local dentist. "There is no mention of this on your file - did you tell your dentist you were on Zometa?" Um... well, FL told the dentist he had Multiple Myeloma and was on Warfarin. "But Zometa? Did you tell them about the Zometa?" FL has no idea what he said to the dentist.
So here's the scary medical bit:
"Osteonecrosis of the jaws is a condition whereby there is loss or destruction of the bone underneath the teeth. This loss of bone appears to be caused by a combination of poor blood supply and impaired bone remodeling or healing."
The advice from the International Myeloma Foundation reads as follows:
"Be alert and aware that bisphosphonate use can be associated with jaw or dental problems, including pain, bone loss, and poor healing. Problems are more likely with longer periods of bisphosphonate use (e.g. several years) and possibly more potent bisphosphonates (e.g. Zometa®).
Be proactive if dental problems exist and/or if any dental or jaw interventions are planned. If feasible, dental evaluation and treatment prior to starting bisphosphonates would seem to be a good idea. Once bisphosphonate therapy has begun, dental extractions, placement of dental implants and/or any other major interventions must be undertaken with due caution. Although there are no conclusive data available at this point, stopping Aredia® or Zometa® for 2-4 months prior to a procedure can be considered. This may help even in the absence of any planned surgery.
Conservative measures such as antibiotic treatment and mouth rinses (e.g. Peridex or hydrogen peroxide) would seem to be quite helpful and safe. Intravenous antibiotics may be required for more severe or acute secondary infections. Ongoing use of an antibiotic such as penicillin has also been recommended if problems persist. Major surgical intervention should be avoided if at all possible."
The Consultant looked like she could have strangled us both. She was... extremely frustrated. And who can blame her? I knew about this disease. I knew about this disease, but I trusted FL's dentist to make the necessary checks before starting work, because I believed they were all medical professionals, and they would understand that there was a reason why FL was mentioning his condition. MM is a pretty rare type of cancer, but you would have hoped that a dentist would be aware of the questions to ask, like "are you on bisphosphonates?" Although, to be honest, FL would probably have answered "no" because he calls it "Zometa".
So now what?
After a bit of confusion, (should she refer him to the Dental School now or not?) the Consultant told FL to go back to his dentist as planned (next week) but to insist on an x-ray and for the dentist to telephone the hospital to discuss what she sees on the x-ray before any work is considered.
In the meantime, he cannot have any more Zometa or calcium supplements.
What does this mean?
Potentially, he could lose his teeth. Actually, he could lose his JAW. And there does not seem to be much that anyone can do about it once the rot has set in.
So this is an interesting new departure. There we were, worried about his back, his lungs, his feet, when we should actually have been paying more attention to his damned toothache.