7/14/25

My mother used to say that no news is good news. I'd say that's true in some situations, but not all.

I've been taking the triple-antibiotic treatment for the mycobacterium avium (MBA), the secondary lung infection that has taken up residence in my left upper lobe, for about six weeks now (since early June). As far as I can tell, I am tolerating the treatment well. I haven't had any of the scary side effects I was warned about -- fevers, night sweats, visual changes, etc. -- although I continue to battle with fatigue. That, to me, is good news, and I deliberately waited a while before updating.

What was scary, though, was an encounter I had with the infectious disease (ID) specialist a few days ago that caused me to request a different doctor. My original ID doctor, let's call him K1, diagnosed the MBA and prescribed the treatment. We talked about it at length over the course of three appointments, and although he seemed to dwell a lot on the potential bad outcomes, I felt he was at least honest with me about what to expect. Then he announced that he was leaving the practice and taking another job in Tennessee, to be closer to family he has there.

So for my first-month follow-up, I was assigned to K2, a different ID specialist. I went in with no pre-conceived notions, but as soon as K2 started to talk, I felt uncomfortable. He started the conversation by asking me how I had been feeling since starting the antibiotic treatment (pretty good, actually), and then without going over any of my recent lab work or my latest scan or even acknowledging my cancer journey, he immediately pronounced that I needed to double two of my MBA antibiotics (I'm already taking a double dose of the third one, as per the written prescription).

When I asked K2 why I should double my medication, he said because that was the standard "protocol" for MBA treatment. I asked him why K1 hadn't prescribed it that way if it was standard, and K2 said he didn't know. I suggested perhaps he search K1's notes to see if he could find out why. He then turned to his keyboard and said "so we agree that you will be doubling your antibiotics" as he typed those words into my file. I asked him if he knew how the double dose would interact with my Tagrisso, the main treatment for my primary illness of Stage 4 lung cancer. When he answered that I also needed to double my Tagrisso, too (from 80mg to 160mg), I told him I would be speaking to my oncologist about that. He didn't seemed too pleased with that response. I also made it clear that I wouldn't be immediately changing my MBA dosage.

Thankfully, I already had an appointment scheduled for the next day with my oncologist, Dr. DeRidder, who's been treating my lung cancer for nearly two years now and we've become very comfortable with each other. When I told her about my encounter with K2, she first looked up the protocol for MBA treatment and told me there was a recommended range -- and I'm within the range. She also looked up K1's notes (like I had suggested to K2) and said she couldn't tell anything specific about why he had prescribed the medication the way he had, but she guessed that it probably had to do with the interaction with my Tagrisso.

The journalist in me appreciated that Dr. DeRidder took a few minutes to actually look things up and not just shoot from the hip, as I felt K2 had done. The one thing she did say quite firmly is that she did not agree with doubling my Tagrisso, because my cancer is stable and doesn't call for that step at this time. She also recommended I call the ID office and ask to be assigned to a different doctor within the practice, based on my level of discomfort with K2.

I called today and spoke to the scheduling assistant in the ID office. There is another ID specialist coming into the practice next month (in place of K1), and I will likely be getting on that doctor's schedule as soon as her calendar is opened.

I feel better already! It's not often I have a difficult encounter like that with a doctor. In general, I trust that they are doctors and I'm not. But I do know a thing or two about advocating for myself when it's not made clear to me why a doctor (or any other professional, for that matter) is recommending treatment that I simply don't understand.

Right now, I feel pretty good; no crazy side effects and my blood work is within range. Me, the cancer and the MBA are somehow managing to co-exist peacefully right now. My next scan is scheduled for August (see Appointments page) and I've also got a couple of pulmonary visits coming up. So I'll post again next month, when I have some new results to share.

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.

3/29/25

I am happy to report that by the time you read this, I will have made it to my 74th birthday (March 30). Praise the Lord! So I'm now counting down -- day 365 -- to my 75th. It just feels like a really significant milestone (three-quarters of a century!)  and it gives me something to focus on while I'm dealing with this infection and ongoing cancer battle.

Yes, the "cavitating left upper lobe mass" in my lungs has been determined to be an infectious bacteria. The infectious disease specialist I went to see still can't identify it; the only thing he said was "it's like TB, but it's not TB." What? Are we talking about tuberculosis here? No, it is not TB because I don't have any of the symptoms associated with TB (fever, night sweats, increased coughing). The specialist said he couldn't pinpoint the bacteria because neither the needle biopsy nor bronchoscopy went far enough in getting a good sample for them to do a six-week culture to see what grows; they only got "stains" that were not specific. So he sent me back for a second bronchoscopy and also asked me to submit a sputum sample, which I couldn't do because I'm not coughing, and when I do it's usually non-productive (doesn't produce phlegm).

I went for the second bronchoscopy on Friday, March 28, and don't have any results yet. But the pulmonologist who performed the procedure told me was that she talked to the infectious disease specialist directly to see what he was looking for this time that he didn't see from the first bronchoscopy. So she did three "washes" to get enough of the infectious matter to submit for a culture, and it will be at least six weeks before they know what specific bacteria is growing. All of this matters because the growing nodule could impact my breathing function, which is already impaired due to the cancer.

What the pulmonologist and the infectious disease specialist agree on is that if I have the not-TB bacteria they both suspect, the treatment will be three different antibiotics that I will have to take for at least a year. So be it; I take a handful of pills now so I'll just have to work another three into my daily regimen. And in a year's time, I'll have another birthday!

I will see my oncologist again on April 7, by which time I may have a preliminary report from the bronchoscopy that will at least shed some light on how my cancer mass is behaving. The targeted therapy tablet I take, akin to chemo but taken orally, has kept everything "stable" in my lower left lung, where the cancer is concentrated, and other places. I certainly want it to stay that way, which is described as NED -- no evidence of (new) cancer.

I'll try to update at least once between now and when I get the culture results, which will be about six weeks.

3/8/25

The last six weeks or so have been such an emotional roller coaster for me, I just didn't want to sit down in front of the computer until I had a concrete update about the suspicious "cavitating left upper lobe mass" in my lungs. The problem is, I still don't have a solid answer on what it is and what to do about it -- even though it has nearly tripled in size since September, when it was first noticed. Here's the background:

In January, a needle biopsy was scrapped at the last minute because the radiologist said the suspect nodule (left upper lobe, or LUL) intended for examination was too close to my shoulder blade, and therefore he could not insert a needle and withdraw a plug without unintended harm. He recommended a bronchoscopy for the next step, which I had on Jan. 30. However, the pulmonologist who performed the procedure was not able to say definitively what the LUL mass is, although she suspected some sort of bacteria and recommended I go back for a second attempt at the needle biopsy. My oncologist concurred.

In early February I contracted a nasty upper respiratory infection that flattened me with a chest-heaving cough. My already low white blood cell count plunged even lower and I could barely move from fatigue. My appetite dropped (I lost 10 pounds) and my oncologist put me on a heavy-duty antibiotic, some codeine cough syrup and prednisone (a steroid).

In the midst of all this, I masked up and went for the biopsy. I had a different radiologist who somehow was able to maneuver around the nuisance shoulder blade and get a good specimen. The resultant tests ruled out bacteria and declared the mass as benign. The written report said "no pneumothorax post left lung biopsy." (Pneumothorax is a collapsed lung). The pulmonologist jubilantly stated in a message to me: "Good news! Your biopsy showed inflammation, no evidence of cancer."

So we know what it isn't ... but not what it is. The pathologist's report made this final diagnosis: "benign, non-necrotizing granulomatous inflammation." An additional comment stated: "the differential diagnosis includes sarcoidosis and various infectious etiologies. The special stains for organisms were negative, but do not completely exclude the possibility of an infectious etiology."

What?!! Talk about adding to the confusion. My oncologist tried to explain that all of this scary language boiled down to some kind of inflammation that "may" have been caused by previous radiation to that LUL area and "should" have dissipated by now. Except it hasn't. She sent me for a CT scan, which came back with the following report: "The cavitary mass in the left upper lobe is slightly larger and more thick-walled than seen previously. This is concerning for neoplasia versus chronic infection/inflammation. I note a benign CT-guided biopsy dated 02/18/2025. Therefore, a granulomatous inflammatory process is the most likely underlying diagnosis. There is additional peripheral scarring versus masslike nodularity seen more anteriorly in the left upper lobe." On top of that, the nodule has now gone from 1.5cm in September to 4.4cm.

None of this is comforting, but I hope it helps put into context why updating has been sketchy. So the next step? The oncologist has referred me to an infectious disease specialist. The appointment is scheduled for March 12, but I certainly don't expect to have a definitive outcome that day. I'll probably be sent for additional tests.

I'm exceedingly glad that my reports continue to say "no new cancer," although my oncologist has dialed back from saying I'm in remission because I'm still in treatment for existing cancer. But I'm very concerned about this LUL mass that keeps growing because I don't want it to endanger my cancer stability. For me, the best case scenario is that it turns out to be something that is easily treatable and eventually goes away.

I'll update when I know something more, even if it's incremental.

1/13/25

Happy New Year!

Can you believe we're 25 years into the 21st century?! That's a quarter of the way through. Couple that with the fact that I was born halfway through the last century (1951) and it really makes me feel like I have been around a long time, crossing several decades of change in this crazy country of ours. But praise God, I have never been so happy to be alive.

Somehow, I managed to skip right on past December in updating this blog, and that's primarily because a lot had not changed with my cancer journey -- until a few days before Christmas. That's when I had a CT scan and discovered that Houston, we have a problem. I certainly didn't want to write about that and put a damper on anyone's holiday (least of all my own), so I waited until now to bring everyone up to date.

At first glance, the radiologist's report for my CT scan on Dec. 20, offered in two sections, was encouraging. "Stable unenhanced CT scan of the abdomen and pelvis. No evidence of active neoplasia." That was the first line of the first section. (Stable, of course, is my favorite word nowadays). Neoplasia is a reference to tumor activity. But the second section of the report, about the thorax (chest area) contained this suspicious sentence: "Cavitating left upper lobe mass, increased in size since the prior examination [in Sept.]." I drew breath and kept reading. The report goes on to say that a pre-existing translucent (cavitating) nodule, that had previously responded well to radiation and was considered stable, had now increased in size from 1.5cm to 2.5cm. What the CT scan doesn't reveal is WHY the nodule increased in size.

That same evening I went home and took a hot, soaking bath with bubbles up to my chin to think and pray. When I stepped out of the tub, I mentioned to hubby that I felt light-headed. I remember thinking I also needed to get something to eat. Seconds later, he was standing over me and asking me my name. Apparently I had fainted, and on the way down I bruised my lip (no skin break but a little swelling) and bumped my forehead (tiny lump, no headache).

I saw my oncologist, Dr. DeRidder, on Christmas Eve. She said the fainting spell might have meant I was overcome by the heat of the bath and a likely drop in blood sugar due to hunger, but if it happened again, she'd send me for a brain MRI. As for the increase in the nodule size, she said it could be due to anything from inflammation (which happened in late 2023 when I had my first bout with Covid) to new cancer. She referred me for a biopsy and braced me for the possibility that I might need to have more radiation. She also said that if this does turn out to be more cancer, then obviously I would no longer be in remission. This was not the kind of information I wanted for Christmas.

The biopsy was supposed to take place on Jan. 7. I was prepped for it (IV inserted, monitors placed in chest area, etc.) but when the radiologist tried to take images to guide his placement of the biopsy needle, he couldn't find a good place to perform the procedure -- so it was abruptly cancelled. Here's how he put it in his report: "Initially scanned the patient in the supine position, and the scapula was covering the lesion, and there was no percutaneous path. The patient was then switched into a right-side-down decubitus position, and images through the left lung again demonstrated the scapula to be covering up the lesion. The patient was then scanned in the prone position with similar results. The patient was scanned with the arms up and the arm down. I could not find a safe pathway for percutaneous biopsy. Recommend navigational bronchoscopy with biopsy."

Yeah, it's a mouthful. The translation is that even though the technicians turned me every which way, the radiologist could not perform the biopsy because the nodule is too close to my shoulder blade (scapula) to insert a needle and withdraw a plug without unintended harm. He recommends a bronchoscopy for the next step -- which I had about 18 months ago when I was first diagnosed. It's a much more invasive procedure (through the mouth or nose), requiring me to be anesthetized.

The radiologist's office bounced me to the pulmonologist's office -- the same pulmonologist (Dr. Enilari) who first told me I have Stage 4 lung cancer. She will likely perform the bronchoscopy. I have a "consult" scheduled with her for Jan. 21.

In the midst of my angst and prayer about all this, I got some good news: the maker of my chemo drug, AstraZeneca, sent me a letter saying I had been granted "legacy enrollment status" and would be able to continue getting my drug (Tagrisso) without cost. Hallelujah! The sobering part of this news is the "status" is good for one year. We'll cross the next bridge when we get to it. Meanwhile, I'm determined to trust God for this journey a quarter of the way through this century.