← Return to Lung Cancer EGFR Mutation Stage 4: What treatments did you have?

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@sophal168

Am on the same medicine right now for approximately 6weeks!! I haven’t had any surgery as my cancer is only within the lung!!!
So to your knowledge there’s no cure for this mutation?
Can I ask which hospital are you treating at?

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Replies to "Am on the same medicine right now for approximately 6weeks!! I haven’t had any surgery as..."

So my lung cancer was originally diagnosed in the upper right lobe in June 2018. Mine must have been bigger than yours because I had that lobe removed, followed by 4 rounds of two chemo drugs and 33 rounds of radiation. PET scans showed no cancer after that. However, in September 2020, I was diagnosed with a cyst in the left side of my brain, the parietal lobe to be exact. I had brain surgery to remove it followed by radiation. Curly hair for 60 years became straight!

I started Tagrisso two months later to make sure there weren't any other cancer cells too small to see in my brain. I've been on it ever since. I did have early side effects. For example, my blood sugar level had been a reliable 95-102 for years and it dove to around 50 one day -- after eating breakfast two hours earlier. But I tested fine a week later. My sodium level, which has always been on the low side of normal or just below the normal range, fell to a level that concerned my doctor. That made me reduce fluid intake for a while, but also recovered.

Two long-term side effects remain. One is brittle fingernails. I swear I split one while wearing gloves one day. I now take 5 mcg Biotin daily and rub Vitamin E oil into my nails and beds. That's helped a lot. My Oncologist assured me Biotin doesn't react with any medication. The second is that I'm mildly immune suppressed. Tagrisso lower red and white blood cell levels, platelet count and platelet volume. Welcome to your new normal blood panel results. My Oncologist tells me I'm mildly immune suppressed, not like people who have an organ transplant.

I'm a NASA rocket scientist in Huntsville, AL and we have great doctors here. Because of Covid, I didn't travel to MD Anderson in Houston, TX for a year and a half. They told me no need to return because my doctors were doing everything they would.

I'm tested every three months: brain MRI, chest/abdomen CAT scan, and MUGA scan. Tagrisso can cause heart problems, though my ejection fraction has slightly increased. I also get blood tests for both my Oncologist and my primary care doctor. One time, my Neurologist asked for an iron panel and I was found to be acutely anemic. I used to have a high iron level. We don't know what caused this.

I did make some personal changes after the brain surgery. I dropped the extra 20 pounds I was carrying and my primary care has told me not to lose more. I walk for up to an hour every day, sometimes vigorously, and I lift weights twice a week. I'm regularly going to a physical therapist who is working on fixing every other thing that's wrong with this oldish, well-used, body, which includes more exercises and stretches.

Still working full-time in a job I love, married to a beautiful woman, and our dog is enjoying the extra waking time. We bought a house about a year ago, and today the sun is shining. Life is good. Feel free to tag me with any questions.