Anyone taking Tagrisso for Lung Cancer?

Wow!! That is s lot. I am sorry you are going through that. I am glad you remain cancer free. Do you still take the Tagrisso?

It has been working for me as of now. The cancer is behaving.

Have you tried any alternate therapies?

@tinae, last year, roughly three and a half years after the brain surgery, my doctor detected renewed cancer activity in the area of resection. Last February (2024), I had one more round of targeted radiation, which worked. I'm still cancer-free.

However, roughly 9 months later, I started to have trouble with my right foot wanting to rotate, so I was walking on the outside edge. The following brain MRI revealed necrosis -- cell death. As those cells died, they leaked fluid, which applied pressure to the nerves in the area and a renewal of symptoms similar to what I'd experienced with the cyst: loss of fine motor control in my right arm, general tightness in my right shoulder/back, an inability to lift my right leg, and drop foot on the right side.

I started taking daily Dexamethasone on Dec. 5, 2024, and began getting infusions of Avastin every other week. The Dex has reduced the swelling, and the Avastin has reduced the pooled blood in my brain. I'm still working through the nerve damage and resulting biomechanical dysfunction, i.e., I have problems walking.

Nerves regrow at a rate of 1mm per month, so restoring my walking gait will take some time. I'm working with a personal trainer to train my body to move as efficiently as possible.

For my situation they just do a CT scan every 3 months. If the cancer is behaving then it is another 3 months. Did a CT or PET show a change in your lung cancer?

My oncologist leads me to believe that if the TAG is keeping the lung cancer under control, then more than likely it would not show elsewhere.

Fingers are crossed for your April MRI.

It was until my last MRI. There’s a tiny - 3mm - bright spot in my cerebellum that may be metastasis. Too small to tell for sure, but suspicious. MRI scheduled for April
Fingers crossed. If it’s my lung cancer, team recommends gamma knife treatment. My concern is that Tagrisso may have stopped working. And if there’s one brain met, might there be more. Haven’t heard from anyone who has had this situation. I was Stage 1b when diagnosed. No sign of mets.

Sorry I shouldn’t have asked that I’m assuming that you’re on that other plan that you and your doctor had?

I know my doctor reminds me that the medicine will stop working at some point.

Gotta love the optimism!!

Hi - is your cancer staying under control with the Tagrisso?

May I ask your current condition?

Thank you for the kind words. I have the Exon 19 mutation which is also treated with Tagrisso.

You're right about pretty much forgetting you have cancer when the medication's working and you're feeling fine! It's not my current condition, but I remember, and I'm looking forward to that "no significant side effects" state again!

Hi Matthew - I was diagnosed almost a year ago did four rounds of chemo and then they got the results back that I had the EFGR Exxon-21 mutation which I believe is what you have. I have bern on Tagrisso since April.

I’ve and pretty unfortunate with the side effects pretty much just the diarrhea.

You kind of forget you have cancer when the medication‘s working and you’re feeling fine then every now and again it enters your mind.

Thanks for all your post. They’re really helpful.

@nanajan, hmmm, I don't see the relationship. Tagrisso is a small molecule targeted therapy that enters a target cell and directly interferes with the cancer's efforts to make that a cancerous cell. It has no relationship with your immune system. But then again, I'm not an oncologist.

I've had lung cancer for six and a half years, metastatic for over four. I choose not to let the numbers determine my life but, instead, to live with hope, determination, and optimism. I encourage you to join me in living with hope, determination, and optimism, not just in health but in every challenge you face in life.