Another Medical Update: BIONJ, November 2020

Medical Updates 4 Minutes

It seems like quite a while since I’ve posted a medical update. Pretty sure that’s a good thing! My last PET/CT was in September, 2020, and it showed that the current medication is keeping the mets stable, which is a good thing. I’ll always hope for NED, which stands for No Evidence of Disease or NEAD, which stands for No Evidence of Active Disease, but we just haven’t gotten there yet in the 3+ years I’ve been living with Metastatic Breast Cancer (MBC). My next PET/CT is in December, right at the end of the SABCS and just before my birthday, so we will find out more information about how this regimen is working then.

So, onto the update about the Bisphosphonate Induced Osteonecrosis of the Jaw (BIONJ), which I was diagnosed with back in June, 2020. BIONJ is caused when the bisphosphonate that I take (in my case, Zometa) to strengthen my bones causes parts of the jaw bone to die. It’s a rare side effect, truly it is, and I, of course, seem get all of them.

As of now, I have (3) three areas in my mouth where the bone is dead. The original area, on the bottom left of my jaw was the first and the largest area. The second appeared on the top right and is still small. The third is one the top left and is literally tiny at this point.

I am thankful that all three of the areas of dead bone are behind the teeth and so are not visible when I speak or smile — here’s my silver lining!

Last week, my dental specialist took a pair of fancy dental pliers and pulled the original dead piece of bone out of my mouth. It was loose and causing pain and inflammation since it was obviously moving around as I chewed. He actually asked me if I wanted to take a picture of it after he pulled it out of my mouth but I was pretty disgusted by it. He did warn me that the antibiotic mouthwash that I’m using would stain the enamel in my mouth to look brownish and wow, it did.

As a result of that dead bone being removed, now I have a divot in my lower jaw bone behind one and a half teeth. A thin layer of very fragile gum had grown behind the dead piece and now shelters the roots of my teeth so that they are not directly exposed in my mouth. It’s super tender and achy. Eating is a challenge, as it has been all year with Piqray anyway.

And so the question is — do I still take Zometa or not?

This is what my dental specialist said last week — since Zometa has an eleven year (or thereabouts) half life and there’s no healing in the affected bone areas until the bone “turns over,” the decision should be about the oncology benefit, not from a dental perspective.

Let me take two steps back here and I’ll explain a little — as I understand it, Zometa works by interfering with the remodeling of the bone, meaning the cycle of bone cells dying and maturing. Basically what happens (in layman’s terms) is that Zometa prevents the living cells from dying off as they are programed to do. The process of cells dying and new cells maturing is normal and happens throughout the entire body all the time, but Zometa interfering with the all of the growing cells, including the cancer means that the growth of the cancer is stopped in its tracks.

So this is a good thing.

HOWEVER (and there always seems to be a however in the world of Cancer, especially MBC), there are some bones in the body that are very sensitive to this interference from Zometa. The jaw bone is one, the femurs are another, and also the small bones of the feet.

It takes years for a bone to “turn over,” meaning that the entire bone is made up of new cells.

This is the bottom line issue — with the eleven (11) year half life and the need for the jaw bone to turn over completely before there would be new bone to fill in the divots made by the dead bone sloughing off, the time that it would take for my jaw to heal and be off of Zometa would likely exceed how long I will live. Especially if stopping the Zometa would mean that the cancer cells in my bones would then be able to escape into other parts of my body, i.e., organs.

Just another ramification of living with MBC and taking the medication that I need to take to keep the cancer at bay. So, I will baby the divot in my mouth for the foreseeable future, continue using the mouthwash that stains my teeth, and continue discussing whether Zometa will continue with my medical oncologist and the rest of my team.

That’s my medical update for now — thankful to not have to update you all on progression or having to change medication or enter hospice, as so many of my friends are doing right now. I am thankful for stability as far as the cancer and dealing with these annoying side effucks are simply not as important when I see how much my friends are having to handle daily. Thankful to be alive and thankful for all of you who continue to cheer me on!

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

42 thoughts on “Another Medical Update: BIONJ, November 2020”

  1. Great Abigail Johnston. I salute to your fighting spirit. I am also a doctor in India have seen many cases dealing with cancer. You can try a guided meditation that would be of great help and some ayurvedic system( traditional Indian system of cure) of medicines.Thanks and have a nice day.

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  2. Oh Abigail. I am so glad that your meds seem to be working. But oh dear that is so sad what is happening in your mouth and chill chill and I can truly sympathise with that because some of the chemo drugs that I had have caused a similar problems in my mouth. And so is this is happened to you as well but I’m so glad that you can see silver lining to it all. All the very very best to you Abigail and I will keep trying to reach me a park and follow up with what is happening to you. Xx

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      1. You are very welcome Abigail. I have had a couple of very bad weeks but I hope to come and tree tomorrow often about what is happening to you. It is so true that these harsh drugs cause such life changing effects. It is sometimes quite difficult to adapt to the things that they have done to us but I guess we have to in the end. I’m glad to see to you, like me, have a s because often that is what keeps us going. So glad to have met you Abigail And I really do wish you all the best kiss kiss

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  3. It’s so important to talk about the risk vs. benefit decisions when it comes to medication side effects and any form of serious illness, because it’s often not clear-cut. Hopefully science will eventually get to a place where accepting horrible side effects isn’t a choice people have to make.

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  4. Oh my dear, I am saddened to hear of your great struggle with this medication; silver lining aside, this is very hard. I pray for you regularly and in this I pray for supernatural wisdom, understanding and peace in the direction that you feel guided in. Thank you for your sharing your journey with us, I hope some how we can be of support to you ❤️hugs.

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  5. So grateful for the update and that it is all about side effucks (which for most of us would be so huge!!) and not about progression. I am praying for stability in your jaw bones and management of that pesky divot…may God flood your heart and mind with comfort and peace as the next scan date approaches 🙏🙏❤️

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    1. If course I join all who are sending you best wishes as you make your way through this painfully fraught but also essential balancing act to maintain stability and hopefully lead you to NED.

      I will say that you’ve become so important to me that I felt a wave of nausea in anticipation of reading your post. Damn side efficiency again, but one you are spunkily living with.

      And as a former medical writer and editor who takes denosumab for osteoporosis, I commend you for your clear description of Zometa’s rationale and impact.

      💕Annie

      Note: I proofread, but the stupid cursor wouldn’t let me correct “If” to “Of” and “”efficiency” to “effucks.” I can move forward, but not backward. Perhaps a good omen?

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      1. I appreciate your support more than I can articulate. ❤️. Moving forward is always my goal and I try very hard to look towards the good that is coming. It’s a mental exercise that does help. Thank you, as always, for your thoughtful responses. ❤️

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  6. Thanks for sharing your update Abigail. I’m glad you’re staying steady, and I hope your December scans give you good news. I’m sorry to hear you’re dealing with the side effects of the Zometa. That risk/benefit analysis we have to do whenever we’re considering possible treatments is tough. Praying you continue to do as well as possible sweet friend.

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    1. Risk/benefit analysis is a good way to put it! While BIONJ is still a rare side effect of Zometa, I was super scared to get it. Now, I want to make sure I educate as many as possible as to how it’s manageable. It’s not easy or fun, but it’s also not so debilitating as to be impossible. Thank you for reading and commenting!

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      1. Thank you for the education you’ve provided (and continue to provide) me. I’ve learned so much from you about MBC and now this…. I have osteoporosis and my doctor and I discussed medication. I took Fosamax for a while, but it caused a lot of problems, and I’m a little afraid of the Prolia since it dampens the immune system. I figure now is not the time for that. At this point, she has agreed to let me do everything I can naturally and we’ll do another DXA in two years and go from there.

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  7. Thank you for sharing. I don’t often comment but I do read your updates regularly. I’m also on Zometa and so this was of particular interest. We are on the same timeframe for scans as well.

    I wish you a lovely day. Sending positive energy and good vibes.

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    1. You are so kind! BIONJ is still a rare side effect; at the same time, I was so scared of getting it and I want to make sure to do my best to educate others than it can be managed. It’s not fun or super easy, but it’s possible to manage. Love and hugs to you! 🙂

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  8. Hi Abigail,

    Good Lord, I hate that your treatment is causing such side effects, or as you so aptly put it – side effucks. We really need less harsh treatments. Sigh…

    Hoping your scans next month bring good news. Thanks so much for the update. xx

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    1. Oh yes we do need less harsh treatments, but I will deal with an awful lot of side effucks to keep the cancer cells in check and stay present with my kiddos. So long as the mets stay in my bones, well, that’s better than the alternative so that’s one of the goals. Thanks for being so encouraging and commenting! 🙂

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  13. OMG, Abigail. That would unnerve me totally. Before I taught, I worked as a dental assistant. having strong teeth has always been a source of pride for me. Now my gums are receding and as more and more dentin appears, it is harder to keep them clean. It worries me to death because I don’t want to lose any teeth, and here you are losing huge pieces of bone. I am so sorry. You have some difficult decisions to face every day. I continue to pray for you. Have a nice weekend. 🙂

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    1. Thank you. It is always helpful to have one’s own struggles put into perspective, right? My mom and I attended the funeral of a dear friend this past week. She was 6 months older than me. Her boys are my son’s ages. Her husband is near in age to mine. We both have MBC. I saw her experiences first hand as she was local and I was connected with her through our mutual medical/cancer team. Thank you for reading and commenting. 🙂

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      1. When you lose your health, you have to be so brave. My mom had kidney cancer in one kidney, which was successfully removed, but her other kidney was deformed and had never functioned. She lived 20 years after that, but said, “Growing old is not for the cowardly.” Everyone at every age has a multitude of struggles that always seem like the worst in the world until you see how bravely someone handles a situation much worse than your own. You are an inspiration to me, and I’m sure you were to your friend. Are you still close to the family? Going through MBC must be easier and harder knowing others who have it. You have someone to share your struggles with, but you have to watch what happens to them, and dread. I always dreaded getting cancer because everyone in my family got it somewhere or another. Now that I have had it, I know I can get through it with God’s help. 🙂

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  14. Hi Abigail. My son just mentioned to me that he had seen you on Twitter,,,something I am rarely on,…probably because I am getting old and am losing brain cells as I type. I was extremely sorry to read about your cancer diagnosis… and very interested to read about the current drugs and treatment you are undergoing, I was diagnosed with BC when my daughter (Abigail) just started 9th grade, Son left for FSU at the exact same time where he remained for 7 years. The cancer returned in 2007 so we took care of that episode as quickly as we could. It has remained silent since then for which I am beyond grateful. Please know I am praying for you!

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    1. Good for you! I’m glad the cancer behaved itself. Yes, I’m pretty active on Twitter and enjoy the different social media platforms for a variety of reasons. Love and hugs to you and your family!

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