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.

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