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@flusshund

Mary,

I'm OK. At the moment, everything's being managed.

Yes, I had my right upper lobectomy in 2018. I had brain surgery to remove a 3.2 cm diameter cyst from my left parietal lobe in 2020. Cancer free since then, thanks to Tagrisso!

About that. My doctor is not planning to stop Tagrisso after three years. We talked about this after I got a second opinion at MD Anderson in 2021. The Oncologist at MD Anderson told me there was no reason to return. My doctors here in Huntsville, AL, have done everything the folks at MD Anderson would have done. Since then, I've heard others tell the same story. We have very good doctors here. I say it's because we have to keep all these old NASA engineers alive!

My doctor intends to continue Tagrisso until the negative side effects become unbearable. The only current negative side effects are the modest immune-suppressed status and splitting nails. The Tagrisso-caused diarrhea resolved itself within the first year. I know my Oncologist is mostly concerned about the potential heart damage. So far, my MUGA scans have shown an increase in ejection fraction, so he's now backing off to 6-month tests instead of every 3 months.

I learned early on to take all "possible side effects" lists with a truckload of salt. The simple fact is we live in America, one of the more litigious countries in the world. I used to work for an expert witness and our attorney shared a book that opened with "Anytime anybody gets hurt, there is money to be made." Lists of possible side effects have to cover absolutely every possible occurrence for everybody. I ask my doctor what he has seen in people like me (my sex, my age, etc.) and ignore the rest. I notify him of what's happening, AND I make sure all my specialists know what the others know. For example, when I had low blood pressure, my Cardiologist relaxed after he learned about brain surgery.

My Oncologist is not using CEA, as far as I know. I know he's using a new DNA biomarker. He hasn't shared a lot of details, but I know he considers it as just one tool.

I'm not a physical therapist, but where is your back pain? I know the first recommendation for lower back pain is to strengthen your abs, particularly the obliques. In the three years I've been tested every 3 months, I've met several other people on Tagrisso. No one has complained about back or joint pain. Diarrhea, splitting nails, and skin rashes are mostly what I've heard. I'm lucky not to have skin rashes.

I hope you can find the source of your pain and resolve it.

Warm Regards,
Matthew

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Replies to "Mary, I'm OK. At the moment, everything's being managed. Yes, I had my right upper lobectomy..."

Hi Matthew,
Thank you for all your valuable information. It’s so helpful knowing some of our similarities and how yours have been treated, side effects and surgeries.
Yesterday I had a Brain MRI and a TTE and from what I could see online about my results they were both good. I am so grateful for that even though I haven’t spoken with my Oncologist yet about the results.
I’ll speak with her this week and will probably go back on the Tagrisso in 2 weeks.
I have been working out with a trainer the last 4 months to get stronger which I have and I don’t think the back pain I’m experiencing is from training. I think it’s from the Tagrisso. I have read where some people do have muscle and joint pain in their back and lower legs. If it’s another one of the side effects and nothing else I will live with all that knowing the Tagrisso is the top drug for the mutation I have for at least 3 years. I’m being treated at Cedars Sinai in LA and am also confident with all my Drs. as well.
I’m glad to hear your doing well now and recovering so well from your brain surgery. Scary! Thanks again for sharing your medical journey and wishing you the best possible outcome also!
Mary ~