I cannot sympathise enough. Other members have been bored in the past by me ranting on about this. Here’s my experience - I hope it helps.
I was put on Zometa (another type of bisphosphonate) in 2013 when first diagnosed with Stage 4. I have always been treated at one of the main, cutting edge cancer hospitals in the country, if not the world (according to them). In 2016 I was referred to a ‘dental specialist’ at the hospital because my teeth were becoming loose and I was in agony. She took a five second look and pronounced that this is what happens if you’ve been on Zometa for too long. So should I stop it? Oh no, it’s such an effective treatment for bone mets. What’s a little toothache when we’re saving your life? In 2017 my cancer mutated and I was put on a drug trial, overseen by an eminent professor, which still included Zometa. As recently as last June the dental specialist wrote to my GP insisting I didn’t have
Necrosis and should continue with Zometa.
I can’t tell you what the last two years have been like. My dentist washed his hands of me - said it was down to the hospital. The GP very reluctantly gave me Amoxicillin but only if I insisted. It made no difference. One back tooth came out leaving another wobbling badly. The gums were inflamed and infected - the loose tooth was like a dagger. The ‘experts’ told me to keep it in. The oncologists didn’t care. Eventually the second tooth fell out. My only friend was my hygienist who was terrified she was going to cause sepsis but kept on because she felt so sorry for me.
I was so miserable I stopped all cancer treatment. I can still see the shocked expressions. I had no interest in living with this misery. I can’t emphasise enough how awful it was. I was on strong opiates which meant I was severely constipated. I couldn’t eat anyway and lost 4kg. And yet they thought the cancer treatment a success.
But there is a happy ending - although very expensive. In the middle of another tear-stained, pain-filled night, on the floor, clutching my husband, we decided to go private and blow our savings. We found a maxillofacial surgeon locally. He looked in my mouth, confirmed it was, indeed, necrosis but first of all said he needed to make me comfortable and wrote a prescription for an antibiotic called Clindamycin. Apparently penicillin isn’t effective on necrosis. Within three days the pain was gone. A week later, he operated, cut the dead bone away, sent a biopsy to make sure it wasn’t cancer (thankfully it wasn’t) repaired the gum and gave me intravenous antibiotics. Job done. Fine now.
There was a lot of head shaking on his behalf about what I’d been through but he said most doctors, especially oncologists, still don’t appreciate the link between bisphosphonates (any kind) and necrosis of the jaw, especially in post-menopausal woman whose teeth and gums will be suffering from losing oestrogen anyway, never mind the impact of cancer drugs. They are also victims of their own success because the longer we all survive, the more damage can be done by the drugs. In fact, the dental specialist at the hospital’s comment was, “at least you’ve lived long enough for your teeth to fall out”.
So here’s what I’ve learned - if you’re in pain, it’s probably caused by infection which is caused by blood not getting through the dead bone. If nothing else, treat the infection with proper antibiotics. If penicillin isn’t working, demand another type. It cost me £3,500 but it was worth it. I hope you can get similar treatment for nothing, as we’re supposed to.
You’ve probably dozed off by now - sorry. Good luck and if you ever want to compare notes, don’t hesitate to get in touch.