Today I went in to Dana Farber for my monthly checkup. Before I get to that though, I have another story to tell.
For the last 12 years, I have been taking the bone-building bisphosphonate infusion, Zometa, to help heal my bones from the myeloma. It seems to have been working quite well, as I have had no bone issues beyond my osteoporosis. For the last few years, I've been taking it every 3 months as a preventative.
However, there is a possible downside to bisphosphonates. One of the potential side effects of Zometa is a condition called osteonecrosis of the jaw (ONJ). ONJ is a condition where the jawbone is exposed and not covered by the gums. The bone then weakens and dies. Yikes!
Ever since I've been on this regimen, I have been going to the dentist twice a year for teeth cleaning and checkups. Everything has been okay until the last time I was there in November 2023 At the time, I had an abscess over my #12 tooth (upper left first bicuspid). They thought it might be a rotting of the tooth under the cap, but after seeing a specialist, it was determined that it was just a gum infection. Fortunately, after some antibiotics, that went away, and everything seemed fine.
Yesterday, they noticed that the jawbone over that tooth was exposed. They took an X-ray which seemed to indicate that I may have ONJ. They referred me to an oral surgeon. I called them and they said they don't take Medicare, so fuck them.
I did a little research on ONJ (what a surprise)! It has 4 stages:
Stage 0: No exposed jawbone
Stage 1: Jawbone is exposed but no pain or other symptoms
Stage 2: Jawbone is exposed and you have pain, swollen gums, or signs of infection
Stage 3: All the signs of Stage 2 and have osteonecrosis in the sinuses or face.
I think I'm definitely Stage 2. I intend to follow up with this ASAP!
Back to today's Dana visit. I met with the nurse team, Shannon and Madison. I was supposed to take Zometa last month but deferred it because I was running late. Good move! I was supposed to get it today, but they put it on hold. They wisely suggested referring me to the Dana Farber dental specialist in ONJ, which I will do. I'll keep you informed about this latest glitch.
Most of my blood tests came back either the same or better in most categories. However, I am still low in white blood cell count, neutrophils, and red blood cell counts, The team suggested that I get another iron infusion soon, but they want to check with my insurance first to make sure it's covered. I've already done this twice before, and it helps.
Today, I got another IViG infusion and a shot of Neupogen, along with my normal treatment.
As for how I'm doing on the Clinical Trial, I only have one result from today. My Free Light Chain Ratio continues to be awesome:
As for the other numbers, I won't get results for another week or so. Therefore, I will assume that they will continue to show no M-Spike. If so, you can assume everything is still going well. I will only give an update if there is some change in the numbers,
