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Margaritaville24

New Here --- Mom Diagnosed in the Fall, Stage IV

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Hi All,

I am a little late to the game...my mom was diagnosed last August/September with stage IIIa non-small cell lung cancer (+EGFR mutation). It came as a huge shock to all of us as she's a non-smoker and leads a relatively healthy lifestyle, aside from immense amounts of stress. Since that time, she's undergone a really rough course of chemo with heavy, heavy doses of cisplatin and horrific side effects. Despite aggressive treatment, she recently progressed to stage IV. She's qualified for a couple different clinical trials and is currently receiving targeted immunotherapy. For a while, I've avoided these groups because I was scared of what I might read, but I also feel like I should be doing as much reading as possible to best support her. I am in medicine myself, I am a pediatric resident, and have had a pretty hard time juggling my demanding work schedule with my mother's diagnosis. We agreed that while things were stable-ish, we would both keep working at our respective jobs. That being said, I worry that at any minute things could take a turn for the worse, in which case I would drop everything and be at her side. I am a big believer in God, but am doing a poor job at putting my faith in him and trusting that things will work out the way they are meant to. I'd really love some direction from anyone on here with experience, someone who might be able to provide me with a roadmap of what resources I should be looking into or ways to better support my mom. It feels like every morning I am waking up from a nightmare that turns out to be real life and I don't think it's something I'll ever get over (though I guess I don't expect to get over it honestly). Anyway, would again appreciate any words of wisdom.

Best,

M

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M,

I understand and by extension, we survivors understand exactly what you are going through.  Having survived 13 years of this madness and had long discussions with my wife, my caregiver, I completely understand where you are concerning your mother's lung cancer, treatment and outcomes.  Here is stop one for your roadmap -- if I can live so can your mom.

I'm now a retired engineer.  I brought my intellect to my disease and it quickly failed me.  My treatments, treatment failures, and fear reduced me to just hanging on while trudging to the next treatment.  But my wife stepped in to fulfill the rational, thinking, and analyzing roles necessary while engaging with my doctors.  She asked the terribly perceptive questions and the second and third order questions that caused my oncologist and surgeon to examine possibilities.  She is not a doctor but has a masters degree in Dietetics and that was background enough to research, read and understand the technical literature.  Perhaps you might fulfill that role for your mother. 

Read everything you can about EFGR positive adenocarcinoma NSCLC and become a subject matter expert.  There are journal articles representing new treatment methods released almost every week. She'll need some help deciding about studies.  Read about immunotherapy and lung cancer.  Understand the emerging possibilities of using Stereotactic Body Radiation Therapy (SBRT) in treating troubling recurrent tumors concert with chemotherapy and or targeted therapy. With so many new treatment methods emerging, practitioners have a tough time keep up.  You might find the nugget treatment method that arrests your mother's disease.

You'll have many more questions as your mom navigates treatment. This is a good place to tee them up.

Stay the course,

Tom

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