June 14 marked three years since my Stage IV lung cancer diagnosis and on June 30, I will complete three years on Tagrisso targeted therapy.
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with my first Tagrisso pills (a sample from my oncologist), June 30, 2022 |
Every year as June approaches, I feel like I am reliving my own Stations of the Cross, recalling what happened each day as I walk toward the inevitable, gut-wrenching diagnosis: my GP telling me the x-ray showed “infiltration” and recommending a CT scan, getting the CT scan and the radiologist (and Leland) thinking I had TB, being sent to the LungenClinic, the doctor ruling out TB and telling me cancer was one of 3 possible explanations for my symptoms, but that it was "unlikely" because of my age, and so on.
Not long ago, a Stage IV lung cancer diagnosis was a
sure, quick death sentence. A researcher who wrote an article commemorating the 20th anniversary of the
discovery the EGFR (epithelial growth factor receptor) mutation driving my cancer recalled that in 2004, “It was not
uncommon for patients to be directly referred to hospice following the
diagnosis of lung cancer.”
But thanks to incredible scientific progress in targeted
therapy and God’s mercy, I have experienced my own resurrection, with my lungs
now clear enough to breath and be able to walk up a hill or climb several flights of stairs without feeling winded like I once did. And all without having to undergo radiation or chemo.
When I was first diagnosed – and even after I learned I was
a candidate for targeted therapy – I had no idea if I would be alive in three
years. I remember in late summer 2022 when Leland and I read the fine print on
the Tagrisso promotional materials indicating that the median overall survival
rate was 38.6 months (compared to 31.8 months for 2 other medications). We did
the math and felt shocked to realize that 38 months was only a little more than
3 years. That seemed like a simultaneously great and terrible statistic.
So, approaching three years on Tagrisso feels like a victory,
especially considering the hell we’ve been through. After being an outlier in all the
wrong ways, I am hoping to be an outlier in the right direction for once – and I
have growing confidence that I might be. What I have going for me is my age
(most people with lung cancer and in the Tagrisso clinical trials are 65 or older) and lack of any other health problems. As I like to say, other
than having lung cancer, I’m in perfect health! Thanks to targeted therapies
and other new cancer treatments, thousands of people like
me are living full lives while managing lung cancer as a chronic, incurable
disease. This was unthinkable even 15 years ago.
But future scientific progress and cancer prevention and treatment, including lung cancer, are now in jeopardy. The Trump administration has proposed a 26.2% cut to the Department of Health and Human Services. This cut includes a whopping 37% cut to the National Institutes of Health and shuts down the National Center for Chronic Disease Prevention and Health Promotion at the Centers for Disease Control and Prevention. The CDC’s highly successful Office on Smoking and Health has already been eliminated, leading the American Lung Association to conclude that “the federal government has virtually abandoned its role to help tobacco users quit and prevent kids from starting.”
The Department of Defense eliminated all lung cancer research funding in 2025. “In a shocking move, the [DOD] slashed its cancer research budget, eliminating all support for lung cancer under the Congressionally Directed Medical Research Programs. The Lung Cancer Research Program, which once funded groundbreaking studies to improve survival and early detection, now receives $0 in FY25. These Department of Defense cancer research cuts jeopardize years of progress and put lives—especially those of veterans and non-smokers—at serious risk.”
Make no mistake: many people will die because of these cuts to
cancer research and prevention – not to mention all the other cuts to
health programs and the loosening of air pollution guidelines. The latest
research suggests that air pollution is the leading culprit in the rising
incidence of never-smokers with lung cancer: “outdoor air pollution is
the second leading cause of all lung cancer cases after smoking.” If I had to bet on what caused my cancer, my money would be on air pollution. I
spent my teenage years (1980s) in So Cal where the smog was so dense that we often
couldn’t see the nearby San Bernardino mountains. And in El Salvador, where I lived for
6 months in 1993 and 8 months in 2001, the diesel smoke was so thick that my
snot was blackish-grey when I blew my nose after running 10K in the city.
Many people don’t realize that lung cancer is by far the leading cause of cancer deaths in the USA and worldwide. Cutting off funding to prevent and treat it is cruel. Budgets are moral documents, and this proposed budget is immoral. As a cancer patient who is alive because of advancements in biomedical research, I take personally the destruction of the US research and public health infrastructure.
Truly!
ReplyDeleteThank you, Esther. Your tenacity and bravery are awe-inspiring. Lots of other thoughts here but for now just thank you. And love to you.
ReplyDeleteThank you, Kai. Back atcha!
DeleteEster ! You amaze me everyday ! Your bravery and spunk is beautiful! May the lord cover you with complete love and healing !
ReplyDeleteThank you, Dolores.
DeleteDear Esther--Celebrating this 3 year anniversary with you and thanking God (and medicine and scientific breakthroughs) for preserving your very life!! It's both sobering and hopeful at once.
ReplyDeleteThanks too for educating us (or at least me) about these funding cuts and air pollution risks (what?? 2nd leading cause after smoking?? had no idea but makes total sense; it's like second-hand smoke)...!
Thank you, Irene! Yes, air pollution is a leading cause of lung cancer, and this is also one of the leading theories about why the incidence of lung cancer in non-smoking Asian women is rising so rapidly.
DeleteThank you for being so positive. You are an inspiration to all of us who have and live with a cancer diagnosis.
ReplyDeleteThank you, Leslie. I appreciate your support.
DeleteI'm so glad all of the right professionals were in your path and you had access to them, but more importantly your tenacity. That Dutch stubbornness comes in handy, doesn't it? I'm sure you are sharing your story with lobbyists, Senators and Congress for supporting research, but getting it to us is somehow the best way to share these actual experiences so others can spread the word. You are probably doing way more than you anticipated, but your strength and intelligence surpasses anything I could do, I'm so proud of you, YAWP!!!
ReplyDeleteHere's to Dutch stubbornness! I am going to work on writing to my legislators. Two out of the 3 won't care...but it's important to tell them the real-life consequences of budgets.
DeleteYeah Sis!! I thank our Creator for you! (Andy)
ReplyDeleteThank you! Igualmente.
ReplyDeleteCancer had no idea who they were messing with! You are inspiration. :-) ~Emily
ReplyDeleteThank you, Emily.
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