Connect
← Return to Lung Cancer EGFR Mutation Stage 4: What treatments did you have?
Discussion
Lung Cancer EGFR Mutation Stage 4: What treatments did you have?
Lung Cancer | Last Active: Jul 12 9:06am | Replies (57)Comment receiving replies
Matthew, so sorry you’re having to deal with all these medical obstacles that seem to be coming your way.
We do have similar situations, so if I’m clear you got the brain cysts after your lobe removal and have been and are still on the Tagrisso.
We’re you getting frequent headaches? That’s what I’m experiencing is headaches everyday for about 3 months and the backaches seem to be worse when resting or at night always. The back is quite painful. I’ve stopped the Tagrisso now for a week and honestly I feel the same with my back pain as well as the headaches are still here.
Tagrisso side effects say you can get joint and muscle pain but this is weird what I’m feeling. it’s literally my back that is quite painful. My bones hurt. Idk it’s just stuff that happens I guess.
I had been working out with a. personal trainer for the last 4 months, I don’t feel the back pain is from working out but since Im stopping the Tagrisso now for about 3 weeks I’m cutting out the workouts just so I can see how my body feels.
I don’t know if you’ve ever had the CEA blood test when they do your blood work but since my surgery in November of last year I had one test done in Dec and it was 1/8, Feb 1.8, May 2.0 and now Aug 1, it went to 6.8.
Not sure what that means either, I’ll speak with my oncologist next week after the tests I’m having done tomorrow.
I understand that it’s called
Carcinoembryonic antigen which is a type of protein that is a tumor marker. Sometimes so much of these descriptions I read on the internet can be so confusing, I try not to but can’t help myself, I’m aways reading about something.
I’m glad to hear that you have been so pro active about your physical therapy regularly and how successful it’s been for you. I hope you can get back to your life before all this happened and I can imagine how sitting at a desk all day still working is also not an easy task.
Thank you for responding and wishing you a better end of the year ! Best of luck!
Mary
Replies to "Matthew, so sorry you’re having to deal with all these medical obstacles that seem to be..."
Connect
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