BIONJ, Part II

I’ve written before about Bisphosphonate Induced Osteonecrosis of the Jaw (BIONJ), which I was diagnosed with back in June of 2020, and you can read about that here. From what I am hearing from a variety of doctors, there are more cases of BIONJ since those of us with MBC and other metastatic cancers are living longer. It’s odd to think about the cons/negatives of living longer, but I think what it exposes is even more fascinating — I believe that the doses of the bisphosphonates might be too high if we are living longer.

Because of speaking up about BIONJ and my diagnosis, that sometimes attracts attention from others, particularly those in the press. I had the opportunity to speak with Diane Mapes, who writes for Fred Hutch, about some new research into bisphosphonates and BIONJ and am quoted in her article here.

I’m thankful that experts are looking into what to do about this very difficult side effect of the meds we need to take in order to ensure that our bones are strong in the midst of cancer treatment. As we live longer, as we take more of these meds, there will be some consequences that were unanticipated.

As I have met with a variety of doctors, it appears that there are two philosophies when it comes to treating BIONJ. One philosophy is of non-intervention until it is an emergency and the second is to intervene with surgery or debrieding sooner. Whatever the philosophical perspective, I think it is super important to remember that we are the ones inside our bodies and to trust that. We are the only ones who know what it feels like to have a hole in our mouths and when it is too much.

7 thoughts on “BIONJ, Part II

  1. Our physician spends little time with us and little time doing work on our behalf. Read a test result, look at a scan, meet with us, prescribe, repeat. It’s the 100% of time we spend in these borrowed bodies containing our spirits and diseases that they can not ever come close to understanding. How unfair the outcomes of this insidious system this is for us and our equanimity I’d not even dare to say…yet the very notion of at least gathering support brings me some hope that perhaps someday no only our disease but our lives become a part of that process becomes stronger- I know in part that’s why we keep writing. Love love love you

    Liked by 2 people

      1. Yes they do. it was a good gathering too – lots of good change, lots of what we gather for – to say what we need to with the company of our friends who cannot say whats really on their hearts in a safe space without feeling judged. I hope you got Loris email – beautiful reading she brought along for us and shared in email – its really very true – it’s called the bad ones. I think you’ll love it let me know if you didn’t get it and Ill forward it to you.

        Liked by 2 people

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