regular update

I had my regular oncology appointment in Pittsburgh yesterday. Dr. Villaruz said the scans look good and everything is stable. Although I don’t have much scanxiety nowadays, it’s always a relief to get good news. Just to be sure that my understanding was correct, I asked her why I’m not a candidate for surgery. It’s because of the cancer’s growth pattern. The one nodule that’s visible on the CT scan could just be scarring; she’s not sure if it’s a tumor. When I was diagnosed, I was told the lung cancer was “lepidic.” This means that the tumor cells were growing along the lining of the alveolar structures (air sacs).* That’s why my lungs looked like they were draped in cobwebs. You can’t do surgery in enough places to get all of it. Thankfully, Tagrisso swept out those cobwebs – and continues to do so. We go back in December for a regular appointment.

*Lepidic spread tends to be slow-growing, with minimal invasion of nearby tissues, less chance of metastasis, and overall better prognosis. So at least I had/have that going for me!

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We returned on July 17 after 15 days in Europe (Helsinki, Tallin, Estonia, Riga, Latvia, and Klaipeda and Vilnius, Lithuania). It was an epic trip -- and my knee was fine despite walking 15K-25K+ steps per day, going up and down stairs, etc. I'm so thankful that injury happened early enough in the summer for me to recover and for my hematologist to figure out a solution. The lower Lovenox dosage is less painful (less fluid to inject = less pain) and cheaper (around $25/month less). This was our first family trip back to Europe since the near-fatal cross-Atlantic flight on July 28, 2022. It sure is nice to travel without a life-threatening health crisis -- or really any health problem!

the Curonian Spit, near Klaipeda

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Days after my diagnosis, I searched two Facebook lung cancer support groups for “adenocarcinoma” and “lepidic” to see if anyone had the same sub-type and cancer growth pattern as I did. Adenocarcinoma means the cancer originates in glandular cells. Lepidic spread is relatively rare: it occurs in <1/3 of people with NSCLC.  I reached out to the only person I could find (Lisa) who had used those terms in her posts. Her husband was diagnosed with stage IV lung cancer just 3 months before I was, and he was also taking Tagrisso as his first-line treatment (our cancers are both driven by the EGFR mutation). He’s probably a bit younger than I am, and they have 2 kids. Lisa and I have exchanged dozens of texts on Facebook messenger over the past 3+ years – updates, information, encouragement, support – particularly in the early days and after my pulmonary embolism nightmare.

Tagrisso had stopped working for her husband some time ago, so he went on other treatments, one of which caused pneumonitis that sent him to the hospital. When I wrote to her in late April, he had been in the ICU for 5 weeks. I thought of her recently and reached out to ask how he was doing. She let me know that her husband passed away on May 30 after 10 weeks in the ICU. She hadn’t wanted to tell me because she knew we were diagnosed around the same time and had the same type of cancer and initial treatment. I appreciated that amid her grief, she was thinking of my feelings. Her husband’s death is a sobering reminder that Tagrisso – or any cancer medication – isn’t guaranteed to work forever. And sometimes life-saving medication ends up taking life instead.