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!