My lung cancer is "stable." But wait ... there's more.
My official diagnosis, received in August 2023, is Metastatic Adenocarcinoma Consistent With Lung Origin. It is also known as NSCLC: non-small cell lung cancer, Stage 4A, with exon 19 (DNA mutation). It is treatable but not curable. I've completed three chemo infusions and ten radiation treatments. That's why I'm ringing the bell and showing off my "completion" certificate. The cancer is considered "stable." However, in May 2025 I learned I have a secondary lung disease called mycobacterium avium. It, too, is treatable but not curable. I take a daily 3-antibiotic cocktail for that, starting in June 2025. I continue my daily oral chemo tablet, called Tagrisso, for the cancer, along with a handful of meds for blood pressure, chronic kidney disease and other issues. So far, my side effects are minimal and I continue to feel pretty good. For that, I give praise and honor to God, whom I trust with my life. See what's new below; click on other pages for more. I tend to update after doctor visits and/or treatments.
What's new: 6/3/25
Finally! After two biopsies, two bronchoscopies, a six-week wait for culture growth, visits to a nephrologist, infectious disease (ID) specialist and a second-opinion pulmonologist, we have attached a name to the mysterious infectious matter that has taken up residence in my left upper lobe (LUL). It is called mycobacterium avium. I call it MBA for short. Although somewhat rare, it is not uncommon in people who are immuno-compromised by lung cancer or other ailments. Like me.
Here's what I've learned about MBA. Like the cancer, it can be treated but is not curable. Essentially, I'm stuck with it for the duration. It is considered aquatic, meaning it thrives in water sources. It is typically inhaled, like in hot tubs or showers. Yes, showers. The steam could contain MBA. It is considered "environmentally ubiquitous," but most people with healthy immune systems kick out this kind of bacteria naturally. Leave it to me to be one of the people who would end up with it.
That's what it is, but here's what it is not. It is NOT a threat to the cancer, although the treatment could impact the strength of my oral Tagrisso tablet (more on that later). Although it has many of the properties of tuberculosis, it is NOT tuberculosis. It is NOT malignant, nor is it sarcoidosis or a couple of other ailments that were tossed out as "could be" before we finally nailed it down. Also, it is NOT contagious, so if you hear me coughing (which I do from time to time) you are not in danger.
Can MBA be treated? Of course. The treatment, to be taken daily for at least a year, consists of three antibiotics: azithromycin, rifampin and ethambutol. The ID doctor was careful to make sure I understood the side effects, which are many. They could include fevers, night sweats and a whole host of other uncomfortable things. I may need to have an EKG every three months, and even my vision could be affected. Sigh. The ID doctor said at least 30% of people with MBA decide to discontinue the treatment because of side effects, and choose instead to just "monitor" the MBA every few months. I don't see that as an option.
I remind myself that side effects are what could happen, not what will happen. My Tagrisso comes with a long list of side effects, but I've managed to skirt most of them. Fatigue is my No. 1 battle, but I have not lost my hair or any of those other disagreeable things. When I discussed all this with my oncologist, she said if the treatment has a negative impact on my cancer -- by depressing the effectiveness of my Tagrisso -- she would either recommend upping the dosage (I take 80mg now) or discontinuing the MBA treatment altogether and moving to the "monitor" phase. Cancer takes priority in the treatment scheme, so she advised that I put at least eight hours between my antibiotic cocktail and Tagrisso. (The ID doctor also recommended taking the cocktail at least an hour after my other meds. That's quite a schedule, but I've got it).
Speaking of Tagrisso, you may have started seeing TV commercials for it. Approved by the FDA in 2015 as a "targeted therapy" for lung cancer with EGFR (that's a long term for DNA mutation), I guess it must have hit some magic 10-year mark for being eligible to advertise on TV because this is the first I've started seeing the commercials. If you notice it, don't be alarmed by the many side effects. As I said, I've sidestepped most of them.
So what's next? I'll get another CT scan next week (June 10) and I have some other follow-ups scheduled (see Appointments page). I'm relieved to finally have a name attached to this LUL "cavitary nodule" and looking forward to it's presence at least being reduced in future scans. All in all, I feel pretty good. When there's something new to report, I'll let you know. Meanwhile, keep praying. I do a LOT of that, along with hubby, for me and for you.