Anybody with NSCLC with EGFR exon 21 L858R mutation response to TKIs?

Hi,
I have the exact same diagnosis as your wife, except that I have bone metastases throughout the central skeleton, so there's no cure and surgery will not be an option for me. I started on Tagrisso almost 2 months ago and have done very well, with few side effects and renewed energy and sense of well being. I'm very grateful for the opportunity to try targeted therapy instead of chemo and/or immunotherapy. Good luck to you and your wife.

@rgwey, like you and @analeemayes, @lls8000's lung cancer has a genetic mutation (ALK) which responded well to tyrosine kinase inhibitor and she won't need surgery.

Here is a related discussion that may also interest you:
- Does anyone have info on new treatments against EGFR exon 19 mutation? https://connect.mayoclinic.org/discussion/does-anyone-have-info-on-new-treatments-against-egfr-exon19-mutation/

Did you find out if her cancer in the lower right lung is the same cancer as in the middle right lobe?

Hi @rgwey, as Colleen mentioned I have a different mutation, so I take a different TKI. The meds have significantly extended my life (3 years and counting) and have given me a great quality of life too. I went from a lung and liver full of tumors, down to some minimal lung scaring. I'm quite active and feeling good. The TKIs can be very effective.
You didn't mention if the cancer has spread beyond her lung. Surgery is absolutely beneficial with lower stage cancers, and when there is a chance for a cure. The TKIs are generally good at getting the cancer under control. As you likely know, the downside is that the body can develop resistance to the TKIs, presenting us with more challenges. I'm glad to hear that the second biopsy was ordered.
Has she started taking the Tagrisso yet? I'm hoping that it's effective for her.
Has the cancer spread? Is she in generally good health other than the cancer? Have you considered getting a second surgical opinion?

Rgwey,
yes, if it is the same mutation, my doctors are hoping Tagrisso will reduce a tumor enough so I won’t need a second surgery. I was also diagnosed with the EGFR Exon 21 L858R mutation in March 2023 after having a wedge and a resection surgery in my right lung. Also a non smoker. After scans and an PET scan surgeon recommended surgery since tumors were 2.4 cm. The surgeon at first thought I had 3 separate different cancers. But the 2 tumors that were removed were both the same EGFR mutation so my oncologist said the other tumor in my other lung most likely is a metastasis. Surgery was put on hold for left lung. I was put on tagrisso end of April. I’ve had several mild side effects, body aches, rashes, diarrhea. The hope is Tagrisso will reduce the tumor so I won’t need the second surgery.

My first CT scan after starting Tagrisso is at the end of June, hoping for good results and a significant tumor reduction . Hoping for good results for your wife also.

@aimee711, Hoping that your future scans show good results! Avoiding surgery is a great goal, please keep us posted. The diagnosis is always such a shock for us.

Thank you Lisa, yes hoping Tagrisso reduces the tumor enough so I won’t need another surgery. It was a shock when I found out after the PET scan that there was possible spread to other lung. I was diagnosed with asthma 8 years ago. I thought symptoms of coughing, difficulty breathing when exercising or climbing stairs was due to asthma. In retrospect it probably was the lung cancer. Good news is brain MRI didn’t detect anything. Grateful for any good news!

Hello, I'm new to this discussion thread. I had a Stage 2b adenocarcinoma in my right lower lobe of my lung removed by resection last November; recovery from surgery was surprisingly easier than I thought it would be. I underwent 3 rounds of cisplatin/permextred chemo infusion (should have been 4 rounds but we ran into kidney toxicity issues). I've been on daily Tagrisso treatment for about 2 months now and it is fairly well tolerated with the exception of the "acne" skin flare-ups that continue to occur. I'm taking doxycycline to help control that along with a topical clindamycin gel and a steroid cream. However the acne lesions continue and are quite annoying and painful. Anyone else dealing with this issue and have any other alternative approaches that are working??