Anyone taking Tagrisso for Lung Cancer?

I have been taking Tagrisso for about 14 months for stage IV lung cancer. A recent PET Scan revealed an increase in the size of my cancerous lung nodules. This coming Friday I will see my oncologist to see what she will prescribe to decrease or eliminate the cancer: Does anyone have any suggestions or comments?

I was diagnosed last August with NSC S3b in upper right lobe and the EGFR mutation. 2 noded involved. Started 4 rounds of chemo 3 weeks apart early October. Added Tagrisso 80 mg about a week after 1st chemo. By Nov, the mass had shrunk about 1/3rd. Thoracotomy 8 weeks ago showed no evidence of cancer! I've waited to start back on Tagrisso due to pain, breathlessness and cough but plan to start back in 2 weeks. I'm praying that I won't have any significant side effects.

I hope the Tagrisso works for you. I had to stop as it caused pneumonitis in all 5 lobes. Thankfully my last scan shows me in complete remission. Praying it stays that way. Good luck

I’m so happy to hear that you’re in remission. How many milligrams of Tagrisso were you taking I’m on 40 mgs. I I couldn’t take the 80 mgs.

I was on the 80 for 7 weeks

That’s great ! I’m sure you will be fine.

@camorton47 , welcome to Mayo Connect, and thanks for sharing your story. Your body has been through a lot. Could the pain, shortness of breath, and cough still be related to the surgical healing? Or does your doctor think it's the Tagrisso? It's probably hard to know at this point.
I hope that you are able to tolerate the Tagrisso. As others have noted here, if you continue to have problems once you start the med again, you may want to discuss a reduced dose with your oncologist.

@camorton47, welcome. I started like you: two nodes in the upper right lobe. But Tagrisso was not the standard of care in the first round in 2018, so I had a lobectomy followed by chemo (Carboplatin/Alimta) and radiation. After my cancer metastasized to my brain, I started 80 mg of Tagrisso daily. That was over 4 years ago. After the lobectomy in 2018, I've never had a recurrence below my neck.

Typical Tagrisso side effects are diarrhea (everybody), skin rash, and nail splitting/chipping. After that, there are some more unusual ones. I've never had the skin rash until recently, but that might be due to another treatment I've had. I take 20 mg Biotin daily to correct the annoying nail splitting. The diarrhea faded away after a few months. Now, I take Metamucil every morning to stay regular!

Tagrisso has been a godsend for us with the EGFR mutation. I know a 7-year survivor, and counting, and one of my doctors has a patient who's been on it for 11 years.

I'd be surprised if the pain, breathlessness, and cough were due to Tagrisso, so please let us know if your oncologist becomes convinced that's happening. Otherwise, I hope you recover soon and can restart Tag.

I just picked up my prescription for Tagrisso would like to communicate with those taking as far as best time of day to start it. I wanted to take it at night but not sure.

Welcome, @camiladeline. i moved your question about the best time of day to take Tagrisso to this active discussion:

- Anyone taking Tagrisso for Lung Cancer? https://connect.mayoclinic.org/discussion/tagrisso-for-lung-cancer/

I did this so you can read previous posts and connect with others on Tagrisso like @babs1956 @acguidon @camorton47 @firefly33 @whahoo and many others who may have thoughts about time of day and whether taking at night worked for them.

Camiladeline, how are you doing? This must be all so new.