Anyone taking Tagrisso for Lung Cancer?

@medtech4 I hope you had a good visit with your doctors. I’m not sure how much I can help, as I’ve only been on Tagrisso so far, but there are some Facebook groups that may be helpful. If you search for Tagrisso, EGFR, or Stage IV lung cancer, you should find several. Wishing you the best of luck.

I started on Tagrisso about a month ago after about 2.5 years on Tarceva after being diagnosed with stage 4 lung cancer (metastises on in lungs at this time). So far I think there are fewer side effects than Tarceva except that I feel a lot more tired (which might not be the Tagrisso, of course). My skin is still dry, nails still pathetic, but I have a bit more appetite and don't have such bad diarrhea. There hasn't been enough time to see if my hair returns to normal (it went extremely curly/frizzy - a bit like Beethoven or Einstein!) but I have great hope! Best wishes to you all.

@debgibson, welcome. I'm glad that Tagrisso was an option for you after Tarceva. Can you clarify for me, do you have stage 4 lung cancer or lung metastatses from cancer at another site/organ? How are you doing?

My wife had stage 2 lung cancer and stage 4 brain cancer and has been on Tagrisso for over three years and as of today NED no evidence of disease. Tagrisso is a life savers, but has many challenging side effects. I guess the punishment fits the crime.

@colleenyoung hello! I have stage 4 lung cancer - tumours only in my lungs. I had lung cancer 26 years ago (lobectomy & chemo sorted that), then breast cancer 20 years ago (primary. Mastectomy, radiation & chemo sorted that) and now another primary lung cancer! I'm somewhat short of breath but really doing fine!

@debgibson I've been on Tagrisso for a month now. Stage 4 lung with mets to brain and bone. I've had few side effects- minor diarrhea and a little shortness of breath. I have a 3 level townhome, so I get a bit winded when I go from 1st level to 3rd for laundry, but nothing I can't live with.

Welcome @divemaster, I'm so glad that Tagrisso has been effective for her. NED is amazing!
I take a similar targeted therapy for a different mutation, and I'm over 5 years. Best of luck to you both for continued success.
What are the most impactful side effects that she continues to experience after three years? Those side effects can be tough.

I have been on Tagrisso for 2 1/2 years. For the last 9 months, my Pet Scans have shown the cancer to be "inactive" (doctor's term). My side affects started about a year on the drug. Worse was diarrhea for almost 6 months. I finally found a supplement that stopped the diarrhea. Now, I am dealing with mouths sores. I get 4 or 5 at a times and worst ones are on tongue. I cannot eat or talk for around 5 days until they start to get better. Then, they take me off the Tagrisso for 10 days and they go away. But, then come back in a few months. Use backing soda to relieve the pain and it does help, but still still takes 20 to 12 days to recover. Has anyone found a way to prevent the mouths sores or a treatment to make them go away faster?