Anyone taking Tagrisso for Lung Cancer?

@mamajite I’ve had progression to four lymph nodes on my left side that weren’t there before. Probably a different mutation. I’ve gotten a blood biopsy recently and this Friday I’ll have a neck lymph node biopsy. I’m also restarting chemo this week.

@babs1956, Tagrisso has been the proverbial godsend for those of us with certain types of EGFR mutation. It's a small molecule targeted therapy that has dramatically extended both PFS (progression-free survival) and OS (overall survival). My lung cancer (LC) metastasized to my brain in 2020, which is when I started Tagrisso. Four and a half years later, I'm still doing well on it and am currently cancer-free. I have two friends who have been on it for over 7 years and are both still active. One is a personal trainer!

My experience with Tagrisso is that the initial side effects, like the ever-popular diarrhea, die off after a few months. That's how long it takes the body to adapt to it. Hopefully, your side effects will also disappear over time.

The one thing I learned later that I wish I'd known early is that the most important thing is to decide what time of day to take it and then stick to that time to maintain a constant level of the drug in your body. Initially, I chose two hours after breakfast and two hours before lunch, and that's still when I take it. Consistent time is more critical with some people than with others, but it turned out I'm one of those people. I had a slight recurrence about a year ago that we successfully treated with 1 round of targeted radiation. My friend Larry had a similar experience. Neither of us has had any other recurrence since the first one.

Targeted therapy is the future of lung cancer treatment; new ones are being developed almost daily! It's actually a challenge to keep up with them all. You can learn more at lungevity.com, go2.org, and, if you're ready for a deep dive, you can join the International Association for the Study of Lung Cancer and see the same information your oncologist is reviewing. Lungevity and GO2 are much more user-friendly. 🙂

Welcome to the club no one wants to belong to, where there are more of us living our lives with lung cancer than ever before.

I have been on Tagrisso 80 mg for 2years & 3 months. The side effects have becoming harder for me to tolerate. I am 81 and that may have something to do with it. I am experiencing bowel problems, facial rash, mouth sores, loss of appetite, fatigue, & nausea and weakness in my legs. My scans have been clear
& I would like to reduce my dosage to 40 mg. I will see my oncologist next week to get the results of my latest CT. I will talk it over with him. Brain MRI next week. My faith in God has gotten me this far , but at my age I would like to have a little more time to enjoy life. God will always be with me!

@almarodel wishing you a clear MRI and a productive conversation with your oncologist. I made it to 2.5 years on Tagrisso and the side effects were really getting to me. hugs!

@mamajite

Did you stop Tagrisso?

@almarodel yes I did. my oncologist is going to try surgery and see if I can stay off of Tagrisso, at least for awhile. my case is atypical in that I have the genetic EGFR T790M mutation.

I took the Covid shot in the beginning, but i have not taken one since 2024 & don’t plan on taking another one.
By my doctor’s advice, I have stopped the Tagrisso for three weeks and I feel better every day! My legs feel stronger and I’m no longer using my cane. Energy has returned, stamina is better and appetite has improved. I stopped it 5days ago. I have just about decided to stop the treatment and live a better quality of life. I am 81 years old. Oncologist will not be happy with me, but it is my choice.
I hope surgery works well for you. Keep us informed!
God bless you!
Linda