Medical Update, ONJ

General, Medical Updates 6 Minutes

About three weeks ago, I started to feel pain in the lower left quadrant of my mouth, tooth #18 to be exact. I’m one of those weird people with more alkaline than acidic salvia and at age 41, I’ve still never had a cavity. (knock on wood). Braces, yes, twice, and I struggle with tarter development, but no cavities. I can’t take any credit for this since my husband points out regularly that I’m pretty lazy about caring for my teeth, something that has to change now.

Once I’d had pain for a few days and it kept getting worse, I scheduled an appointment with my dentist. He knows all about my metastatic breast cancer diagnosis and the X-rays showed that I still don’t have a cavity. I love my dentist, he’s a straight shooter and doesn’t have much of a poker face. Even with the mask on, I saw his eyes widen. He quickly told me that he knew what was going on but had literally never seen it before in real life, just in his training. I was referred to a few oral surgeons and he offered to write me a prescription for the pain; at the same time, he chided me a little since the pain I was and am feeling apparently is so far beyond the pain of a cavity that I should’ve known something else was going on. Just one more weird experience related to my pain tolerance.

After some phone calls and a little begging, with a few tears, I had an appointment fairly quickly with THE oral surgeon with significant expertise in the affects of bisphosphonates on the jaw bone. He confirmed my suspicions, I have osteonecrosis of the jaw (ONJ) in a fairly typical presentation in a very typical spot. For anyone who is super curious, here is a general overview of the diagnosis and some of the related issues/treatment. One distinction I’ve learned is that I have medication induced ONJ, which behaves differently and is often differently treated from ONJ arising from a different source.

My understanding of the situation as it pertains to me is this:

  1. Zometa, the bisphosphonate that I get monthly via an infusion, affects the death and replacement of cells, both healthy bone and cancer, in my bones. The result of Zometa’s interference in this chemical equation means that the cancer growth is inhibited and there a “sealing” or “coating” affect as well, which means that the cancer is trapped inside the bones and is unable to spread to my organs, something I’d like to keep as long as possible. I do know that the scientific explanation is much more complicated, but this is the best way I can explain this process in words that I understand.
  2. The jaw bone is something like ten (10) times more sensitive than any other bones in the body to this medication. I’ve had TMJ in the past and I believe that some of the migraines I’ve gotten at various times in my life has been related to jaw pain. All of the bones and systems are super close to each other in the head and referred pain is definitely something I’ve struggled with.
  3. Because of this sensitivity and the years of getting the medication monthly, a part of my jaw bone has died. Breaking down the actual word helps: osteo = bone and necrosis = death. Eeek, there’s something very very strange about knowing a part of your body that is supposed to be alive is dead inside your body. Weird Weird Weird.
  4. Once that part of the bone died, the gum covering that part of the bone died as well and is gone — bleh, I probably swallowed it, yuck. No blood flow to the bone means that there is no blood flow to the gum. Therefore, a gum graft to cover the bone that is open to the inside of my mouth won’t work because whatever is placed on top of the dead bone will die too.

I keep learning such strange things about cancer, cancer medication, and the side effucks. For now, the treatment for me for my ONJ is antibiotics. Several to start with and then I’ll be on a low dose antibiotic for so long as I have a jaw bone. Thinking that’s a pretty necessary bone, so I’ll be taking it for a while. I’ll be following up with my fancy expert doctor regularly and we will likely have to adjust my Zometa treatment but it appears that I can stay on it, albeit perhaps at longer intervals, probably moving from monthly to quarterly.

Before I close this post, I wanted to give you all a glimpse into the experiences of living with this disease that I don’t always write about. When I sit down to write blog posts, it’s usually in the aftermath of an experience once I’ve had the chance to figure out what I’m going to do about it and when a plan is in place. That isn’t always reflective of my initial reaction and I wonder sometimes if I’m giving people a false sense of the experience or how I’m dealing with it.

When I saw the exposed bone inside my mouth a few weeks ago, I knew what it was right away. Yes, I realize I’m not a doctor and my self-diagnosis doesn’t mean much of anything; at the same time, I’m fairly well informed about the medication I’m on and the side effucks to look for. I didn’t do anything other than deal with the pain for a few days while I dealt with the emotions that came along with it.

More than anything else in the last three years, finding out that my jaw bone was likely dying felt like imminent death to me.

Why?

This may seem convoluted, but having to slow down or stop taking Zometa felt to me as though the mets would immediately leave my bones, take up residence in a necessary organ for life, and kill me quickly. Too many of my friends die each day for me not to think the worse possible outcome when cancer takes over a necessary organ. The intense pain I’ve been dealing with, which has been steadily increasing did not help, the fact that I’ve had to be on oxy to handle the pain when I’d been able to wean myself off, the fact that the jaw pain caused multiple intense migraines that lasted for several days, and the fact that I’ve struggled to sleep as a result of all of those things, well, it is not a recipe for thinking clearly/rationally.

Once I’d had some time to sit with these feelings, do my research and get to an expert, I’ve been able to be more logical, more practical, more of a realist and deal with the logistics of treatment and visits and medication and adjustments.

Living with a terminal disease that loves to throw curveballs at all times is not easy, it’s messy and it’s emotional and it’s tragic in so many ways. That is not to say that I don’t have hope, that I don’t use my energy to find better and best ways of treating the disease and the consequences of that treatment. It’s just that the wallowing, the dark places, and the anxiety is also part of living with a terminal disease. Sometimes it’s more wallowing than progress; other times, the opposite.

At the end of the day, there is nothing special about walking this road. I am human and dealing with pain and nausea and pain and vomiting and more pain wears on me. Thinking that I’ve reached a plateau and I can breathe a little only leaves me open to the disappointment of being thrust back into the hopelessness and helplessness of a new life threatening issue that must be addressed. Yes, I caught my ONJ early and we’re going to treat it, but ONJ is something that could kill me if not addressed. I’m not sure how many more potentially terminal diagnosis one body can handle.

For today, I know that we have the rough outlines of a plan, with more details to be fleshed out, I have medication that will help my pain, and I believe that I have the right team members in place. Tomorrow, it may be an entirely different situation. I’m learning to be more comfortable with this ever changing life with MBC and I can say that I will die of this, but not today.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

71 thoughts on “Medical Update, ONJ”

  1. Thank you for your words of insight and honesty. Cancer steals so much from your life yet you manage to find a way to move on. It sinks and I wish you didn’t have to deal with yet another issue.

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    1. Yes, we all find ways to move on carrying all of the emotional and physical ramifications. At times, it does feel too heavy and yet there are plenty of pioneers like you who show us newbies how it’s done. Love and light to you. ❤️

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      1. I met a woman at a LBBC conference living 20+yrs w/MBC surviving brain & bone mets and jaw necrosis. She shared they’d done a bone transplant to repair/reconstruct the jaw. She looked totally normal. Hope that’s encouraging info.

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  2. I had a jaw situation earlier this year, different diagnosis, but it included dead, exposed bone that eventually worked its way out of my gums. I didn’t know that was possible. I hate that you deal with these things on top of cancer. It’s awful. Sending love and light your way!

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  3. My dear friend, you are a living example of the adage “that which doesn’t kill us makes us stronger”! I am so very sorry for your most recent freakin’ effuck.
    A friend with metastatic prostate cancer that had pretty much destroyed his bone marrow developed ONJ from Xgeva, which I take in much lower dose twice a year as Prolia (denosumab) for my osteoporosis. He was paying daily trips for treatment and after several weeks, that part of the various plagues has been resolved.
    My best to you—sending positive thoughts as always, with a specific one now focused on your jaw.
    💕

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    1. Thank you!!! I am so very blessed to have access to the doctor who specializes in it and to get the best available treatment. It’s still weird to have dead bone in my mouth, but I’m adjusting. ❤️

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  6. Learned a new word, thank you! Side Effucks! Don’t you just love cancer? (NOT.) I was on Zometa following my last radiation. My onc told me that while it’s good at treating bone cancer radicals, it has its ‘effucks.’ This time around with MBc, I get Xgevia shots every three months. Last time I went for a dental cleaning, the hygenist told me to be sure to have flouride in my home dental care. Yikes. She knows what can happen. I hope your treatment goes well. “the wallowing, the dark places, and the anxiety is also part of living with a terminal disease.” Truth.

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    1. It’s such a weird line to walk, getting enough treatment to keep the ever evolving cancer in check while not doing too much that the patient has no quality of life. Thank you for reading and commenting!! Love and light to you. ❤️

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  12. I read this earlier and came back to comment. I don’t even know what to say. It’s like you’re running a marathon with all these unknowns being thrown at you. I’m really glad this was caught and that you seem to have a good team around you. 🌷

    I was watching a SBSK video series on YouTube on a young man named Kayne who passed away around the age of 19 due to a rare-ish cancer. They did the interviews over a span of time. For me it was like a spiritual 2″x 4″ to the back of my head (in a good, nonviolent way) to realign my focus and soul in a way. Don’t know if it would be helpful (and forgive me if it’s at all insensitive) to you or yours at this time, but I thought I would mention it. Cheers.

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    1. Thanks for the suggestion!! I always like to see experiences from different perspectives, when I’m up for it emotionally. 😉. I agree, the marathon metaphor is more applicable than the war metaphor. Love and light to you! ❤️

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  13. I’m so sorry you have yet, another level to deal with on top of everything else. I only had the bisphosphonate infusion once. Unlike you, I have “bad” teeth and when I learned of the side effucks(as you so aptly put it), chose not to get them anymore. My oncologist was not pleased. I hope the antibiotics works for you.

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    1. Thank you!! We all have to make the best decisions we can for us and our unique bodies. I have read that having dental work, especially root canals, do make it more likely ONJ will happen. I think they don’t really know. Thank you for reading and commenting!! ❤️

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  14. My first cavity was found in the last year and I completely blame it on what treatment does to my body. I was switched to a quarterly plan with Zometa rather quickly. I resisted but relented as osteonecrosis was explained to me. I am so sorry that there is another something on your plate. Enough! I hope you can find relief and the antibiotics so their job.

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  15. Bless your sweet heart.
    I’ve been reading your blogs for about a year now. Thanks to a friend that also has MBC.
    She is as you are, an amazing warrior. I took my healthy body for granted until she was diagnosed. Now I take nothing for granted. Thank you for sharing your experiences and emotions with honesty and straight up love.

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    2. Yes it does! I can’t take credit for effucks. I stole it and now I don’t remember where I stole it. If I figure it out, I’ll give proper credit. :). Thank you for reading and commenting!

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  18. I am feel sad reading this post. I feel sad about the bodily and emotional pain you are going through. I feel sad just imagining the uncertainty you must feel. I wish I could say or do something that could make you feel better on those fronts.

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  19. I live with severe daily pain also and appreciate your words. Every moment of every day is difficult, so we can only take on one day at a time. Thank you for your vulnerability and honesty. It’s a gift to your readers. You have gifts to give daily. We all do, and you helped us to be aware of that and grateful. God bless you. Darci

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  20. Dear Abigail, I don’t have to deal with any life threatening illnesses other than old age and arthritis so I can not understand what you are going through although I have seen other friends and relations who have been on the same journey. But there is one thing – you make the pain in my knee go away. It becomes so irrelevant in contrast it just doesn’t matter. Thank you for your blog.

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  22. Hi Abigail,

    I cannot believe the sheer range of side effects you’ve had to contend with. You knew what you were doing when you named your blog.

    I was about to comment on one of your other posts – about the trials and tribulations of your treatment so far – and then this one comes along.

    I remember being horrified when I found out about ONJ when I started on Zometa after primary BC. I can only wish you a good outcome on this particular aspect of your treatment.

    Wishing you peace.

    Maureen x

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  25. I’m so sorry to hear this about this new problem. I too have a high tolerance for pain because of Fibromyalgia. My docs or physio will regularly ask me how the hell am I smiling through the pain. I know no other way. This is my new normal. Well not new anymore.
    Very interesting read. Thank you for sharing

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    1. And those crazy charts!!? I’ve learned that when I have to rate my pain on their scale, I have to add points to make it translatable. My pain doc laughs at me sometimes because she knows what I’m doing and she understands. Thank you for reading and commenting!! ❤️

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      1. LOL I did an actual document with graphs to try and explain the pain. I just couldn’t articulate it as much as I tried
        My rheumatologist knows me for years and laughs too because he knows me well. 😁😁

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  28. Holding you in heart and prayer, Abigail. This just plain sucks. I’m sorry. And I totally get it about the processing time; it’s why I’ve been so long between posts. Bless you for sharing your journey.

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  30. Glad you got good professionals on your side! Thanks for sharing your journey. Love the new word. The fact that cancer can cause fear on a cellular level is sometimes lost on people. Doesn’t matter how smart, how strong, how full of faith and hope you are on some days, sometimes it’s seriously does effuck us.

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