Anyone taking Tagrisso for Lung Cancer?

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?

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?

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?

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.

@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.

@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!

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.