Living with Osteoporosis

As a ten year survivor of breast cancer and outliving my prognosis twice, I was diagnosed in 2000 with mets to the bone. Thankfully, the diagnosis, and not having a biopsy, was wrong. That’s the good news. The bad news is that because OF the diagnosis, I was put on aredia i.v. for two years (until 2004) and then switched to zometa (both are bisphosphonates, similar to boniva, fosamax etc. used for bone density to prevent osteoporosis). I was on the bisphosphonates for a total of seven years.

After a series of painful health issues including twice breaking my femer (once on its own because I fell; the second time I slipped in the supermarket and broke the 32″ rod holding my femer to my hip!) I titrated off all pain medications. Then, I became aware of an uncomfortable pain just below my tooth in the back on the inside of my bottom molar. It took some time, but I was finally diagnosed with osteonecrosis of the jaw, bisphosphonate related!…I am wanting to speak with others out there who may be suffering from the same painful problem as I. It’s pretty rare, so I find that most, if not all, medical professionals don’t know enough about it or how to treat me. I am unhappy and feel abandoned by my doctors.

Many things have happened to the bone in my jaw in the last nine months since I became aware of the problem. Information has evidently been out on the possibility of ONJ caused from prolonged use of bisphosphonates, particularly if give intraveneously, yet nobody suggested that maybe I should stop taking the medication which was given monthly for seven years.

I feel scared and alone. The pain is now interfering with my social life, such as it is, because it is painful to talk. It is painful to eat. Is there anyone else out there with the same issue? If so, please comment below. I have outlived my prognosis, and, sadly, the “life” in “living” is now even more compromised than the actual chemotherapy and radiation was.