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

Mary, I have been on Tagrisso for just 2 weeks. Major side effect has been diarrhea every day. This subsided a few days ago. I'm waiting for the other shoe to drop with more side effects as time goes by. I've been alerted to splitting nails and skin rashes by my oncology team (nurse and pharmacist). No one has mentioned back pain - or pain in general. I try to think of Tagrisso as my life support system to cope with the side effects. 3 years seem like such a long time. I'm 78 - so will be into my 80s when I finally stop the Tagrisso.
Hope your symptoms soon subside. PS: As far as I know, I've never had a CEA blood test.

Hi Francie , thank you so much for your reply. I’m 73 and yes it seems like 3 years is a long time but that’s what my oncologist said I’ll need. I had the same diarrhea in the beginning it does get better, the splitting and peeling of the nails has continued and the queasy stomach, I also get some canker sores in my mouth but I use the abreve and that helps.
Also for the stomach I use emetrol and that also works.
My hair has thinned out a little, I’ve also noticed that.
I am grateful for the Tagrisso as well. Whatever comes my way I’m ready for the challenges 🙂
Good luck with Tagrisso and looking forward to our chats.

Mary,

At first, I was trying to remember if I had written this! We have a similar case. I had my upper right lobe removed. I was also diagnosed with the EGFR mutation Exon 19. I'll be on Tagrisso for 3 years end of December.

I definitely have the nail-splitting side effect. 5 mg of Biotin daily has helped a lot. My Oncologist assures me Biotin will not interact with anything else I'm on. I keep my nails short, which works better with some fingers than others. I'll renew my Biotin at 10 mg.

I've been tested every 3 months since the brain surgery to remove my metastatic cyst. That's when I started Tagrisso. Every 3 months, I "donate blood" (my description of getting blood tests) and receive a CAT scan, MUGA scan, and brain MRI. The MUGA scan is because Tagrisso can cause heart problems. However, my Oncologist just decided to back off on the MUGA because my ejection fraction has increased during the monitoring period. Similarly, the brain MRI has been consistently negative. I credit my heart health to regular walks, including periods where I walk very quickly to push my lungs.

I've been dealing with GI problems since last Fall. By now, I've had an upper GI, which showed Barrett's esophagus. If you're not familiar with that one, it means I've had reflux for so long my esophagus cells have tried to change to stomach cells. Mine extends over 30 cm above the stomach. I take 40mg of Nexium every morning.

My last Colonoscopy showed microscopic colitis, which is inflammation of the colon. I've started a Budesonide regimen that will last for 3 months. I think of Budesonide as Prednisone for the gut. It works great, and my GI issues have settled.

My primary care won't let me lose too much weight. Tagrisso makes us immune suppressed, so my doctor insists I carry a few extra pounds in case I catch something that causes me to lose 10-15 lbs. His strategy has helped while I've been dealing with these GI issues.

I also have chronic back pain. However, I believe mine is due to two things: the brain surgery that affected muscles on the right side of my body, and the fact that I'm still working a desk job that has me sitting for long periods every day. I'm working with a Chiropractor and Physical Therapist and am making steady progress. I have a list of exercises and stretches. When I'm good about doing them as scheduled, I feel better. My goal is to be back to Matthew BBS (before brain surgery) by year's end. I'm a huge fan of Physical Therapy as I've fixed a couple of things without surgery that way. Let me know if you need advice on how to find a good one. The not-so-good ones don't help.

I wish you all the best and hope your doctors can sort out your symptoms.

Matthew

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

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

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 ~

@maryb50, I thought I'd check in. Any update? How are you doing?

Hi Colleen, thank you so much for checking on me. I’m having a ct/ pet scan on the 29th and hopefully we can get to the bottom of all this pain I’m having in parts of my upper back and side areas. I’ve stopped the Tagrisso now for 3 weeks and once we have those results next week we will know how to move forward.
I was on a steroid pack for 6 days and that didn’t really help, I’m using lidocaine patches but the most relief I get is using tiger balm on my whole back and taking Tylenol 650 mg. regularly.
I’m days away from hopefully figuring this all out.
Thank you again for reaching out, very much appreciated!
Warmest regards,
Mary

WHAT is EGFR mutation to the lug? Is it ANYTHING like eGFR of the kidney? I'm so confused.

Hello etb2,
Medical acronyms can be confusing for sure. eGFR stands for “estimated glomerural filtration rate” and is a blood test result that can help determine how well your kidneys are working (or not working). For lung cancer EGFR refers to a genetic marker on lung cancer cells that helps define that particular type of cancer (different genetic mutations can lead to different types of lung cancer). Once the physicians have determined what type of cancer cell mutation you may have then they can prescribed the most effective drug treatments for that specific cancer.
In my particular case I had surgery to remove the right lower lobe of my lung which contained the tumor. The genetic testing of that tumor showed that it had the EGFR mutation which put me on the front line chemo treatment of cisplatin and pemextred (by IV infusion) followed now by daily oral doses of Tagrisso.
I hope this helps!