Skip to main content

Pulmonary function test and Tagrisso milestone

Thankfully, I haven’t had much to report health-wise. I’m continuing to feel well, and now only use oxygen while flying. I did have a major skirmish with insurance because I noticed that the oxygen supply company said I owed over $550 in unpaid bills, instead of the usual $16/month. After hours of sleuthing and contacting PSU’s Highmark concierge, I learned that the oxygen company somehow neglected to submit the in-network renewal paperwork, so I was being charged out-of-network prices for 5 months. Earlier this month, I spent nearly an hour on the phone filing an appeal. I learned this week that it was approved…but I still wasted probably 3-4 hours of time and a lot of mental energy because of someone else's incompetence.

I had my pulmonary function test today, the first since May 2024. One indicator increased, another decreased slightly, and the third decreased from 86% to 75% (% of expected value for women my age). (see below) My pulmonologist thinks this may be a function of the test, not my lungs, since I’ve had no shortness of breath, coughing, or other symptoms, and he said my lungs sound great. So, I have to do another PFT in 6 weeks. Not gonna lie, this is freaking me out a bit, especially since I don’t have a CT scan and oncology appointment until the end of March.

The median time to resistance for Tagrisso is 19 months. Resistance is when cancer cells become resistant to the medication. At that point you have to go to plan B: another medication (targeted therapy for the new genetic mutation, immunotherapy, etc.), chemo, and/or radiation. Coincidentally, today marks 2 years, 7 months (31 months) on Tagrisso – 1 year past the median. I’m profoundly grateful for this miraculous, life-saving drug. At the same time, the thought of resistance is always lurking.

Leland and Lily gave me a subscription to People magazine for Christmas (don’t judge!). A quote in a story about a young woman with cancer resonated with me. “You think when you have cancer, you’re going to wake up every day and think, ‘Oh, I have cancer.’ At some point you wake up, and you just live. You don’t even think about it.” I can attest that this is true.

 

Pulmonary function test results

FEV1 (forced expiratory volume) measures the air you exhale in 1 second.

Jan. 2025: 105%

May 2024: 98% (34% improvement since 10/22)

Nov. 2023: 95%

May 2023: 91%

Oct. 2022: 73%

TLC (total lung capacity) is the total volume of air in the lungs after inhaling as much as possible.

Jan. 2025: 93%

May 2024: 102% !! (48% improvement since 6/22)

Nov. 2023: 95%

May 2023: 83%

Oct. 2022: 72%

Jun. 2022: 69%

DLCO (diffusing capacity of lung for carbon monoxide, aka diffusion) is the extent to which oxygen passes from the lungs into the blood. It indicates the extent of lung damage.

Jan. 2025: 75%

May 2024: 86%

Nov. 2023: 82%

May 2023: 68%

Oct. 2022: 49%

Jun. 2022: 41%

 

Comments

  1. Enjoy those magazines! I am amazed by you everyday ! Keep rocking it

    ReplyDelete
  2. Thanks for keeping us updated Esther. Having that lurker sucks! Believing that the medicine will continue working the same way. You are amazing!

    ReplyDelete
    Replies
    1. Thanks, Henson. Hoping for normal results again for the next test.

      Delete

Post a Comment

Popular posts from this blog

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 progno...

38.6 months

September 18 marked 38.6 months (3 years, 2 months, 18 days) since I first started taking Tagrisso. Why is 38.6 months significant? Because it is the median overall survival in the FLAURA study, a landmark study (2014-16) comparing Tagrisso and older targeted therapies among patients with advanced non-small cell lung cancer, EGFR mutation, and no prior treatment. 279 patients received Tagrisso and 277 people received an older drug (in addition, all patients received at least one dose of a trial drug). Nearly 58% of patients had died when data collection stopped. However, patients in the Tagrisso group lived nearly 7 months longer (median) than the control group. When Leland and I initially read that number – 38.6 months – in the Tagrisso promotional materials, we were stunned. This was supposed to be good news? The median age in the FLAURA study was 64 and at the time (August 2022), I had just turned 50. But still, it was a sobering statistic. For the longest time, I didn't feel ...

A failure of institutional care

I just hit "send" on this letter to my dean and associate dean. Mic drop. I've never sent such a scathing letter, but it's definitely called for in this situation. I'm not expecting anything other than a "Oh, that wasn't how we intended to make you feel; our hands were tied" email. Dear Dean Lawless and Associate Dean Lloyd, When I wrote to Professor Land [my department head] to see if I could get a course release this fall due to having lung cancer plus complications from pulmonary embolism and COVID, I had no idea what I was in for. When faculty friends in other colleges have had health crises (ones that don’t warrant a full-semester medical leave), their department head or dean has simply said, “Don’t worry about teaching this semester. We’ll figure it out.” I figured the same would happen in my case. To be blunt, the way that my case was handled was a colossal failure of leadership. As my husband and I have shared my story with colleagues at PSU ...