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

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.

Hello Francie,
I was diagnosed last May with lung cancer, small growths in both right and left lungs. Surgery to remove lower left lobe was done in June -biomarker testing showed it to be EGFR. However, lymph nodes clear, no sign of a specific means of spread. I chose 2nd surgery for right lung tumor - it was right alongside my heart. All lymph nodes clear, no sign of spread. That tumor was also determined to be EGFR. My oncologist recommended Tagrisso for 3 years as prevention - I've been on it over four months now and doing well. Astra Zeneca is providing it free thru their AZ&ME program. Simple form - they provided a swift response. At first I received it free even though I had private insurance. Now I am on Medicare, had to reapply, but still had positive results. I am SO grateful! Taking the Tagrisso was a choice my oncologist recommended, however he said about 50% of oncologists wouldn't suggest it as I was technically "cancer-free" after the second surgery. This is a good decision for me. Best of luck to you! You got it early which is great! I'm back to attempting to play pickleball and tap dance!

Thanks so much for this. My doc is recommending 4 rounds of chemo first. Still trying to understand why. I think edges of tissue removed in surgery were very close to-if not actually touching-the pleura, so she just wants to make sure there are no stray cancer cells left after surgery. No idea how we’ll pay for the Tagrisso. I have Medicare and Med D and am retired.
Thanks for sharing your positive experience. We are former tennis players considering taking up pickleball.

Did you also have mouth ulcers from chemo? How did you treat them?

I did not have chemo. My treatment plan was surgery for removal of large brain tumor and then targeted radiation therapy. Now taking Tagrisso.

Sounds like you arevstring and doing incredibly well. I’m about to start chemo followed by Tagrisso for 3 years. As for chemo, did you have mouth sorrs? If so, what did you take for them? I’m inspired by your exercise schedule as I need to be more active. Thanks.

@franciekid, I love the photo you added to your profile. Nice to put a face to a username.

You may be interested in the tips in this related discussion:
- Mouth Sores from chemo: When do they go away? https://connect.mayoclinic.org/discussion/mouth-sores/

Sorry to hear you're dealing with mouth ulcers. They are miserable!

Not dealing with them yet. I start on Apr 26 and am searching for ways to minimize side effects. Thanks for the link. Oncology nurses may have some suggestions, but I haven’t met with them yet.

No, I didn't have mouth sores. I did have a friend advise me to start taking a laxative, Metamucil in my case, three days before each round of chemo and continuing until I was normal again. I forgot the first time and never again!

Francie, I noticed I never answered your primary question. Is Tagrisso a cure? No one knows yet. The FDA gave initial approval for its use in 2015 and regular approval in 2017, so it's really new. For what it's worth, the MD Anderson Oncologist said he would put me on it for three years, and continue quarterly testing (brain MRI, chest/abdomen CAT scan, MUGA scan, and blood tests) every three months for an additional three years. If the cancer didn't return, he would consider me cured. My Oncologist is more conservative and plans to leave me on it "forever" or until the potential negative side effects, which include heart failure, become unbearable.