Mikee,
Sorry to hear you've joined the club. I'm guessing you mean "Tagrisso". If not, you can stop reading. 🙂
I'm 63-years-young and have been on Tagrisso for over 3 years. So far, the primary outcome has been that I've been lung cancer-free for 3 years. I have to add the qualifier because a whole-body dermatological scan found a basal cell carcinoma on my cheek that was removed last month.
The only long-term side effect I've experienced is brittle fingernails. 10mg of Biotin daily has helped. Initially, I had the usual diarrhea, plus low sugar and sodium levels. The sugar levels corrected themselves. I was taking up to 2 Imodium a day at one point, but that faded and disappeared after about 6 months. My sodium level was around the minimum normal since before I had cancer, but it got worse. Today I limit my fluid intake to no more than 50 to 60 oz (1.5 to 1.8 liters) of fluid per day, as recommended by my Nephrologist. As long as I do that, my levels are OK.
I had other symptoms that I suspect or know were not due to Tagrisso. My lung cancer metastasized to my brain, and I started Tagrisso a couple of months after having brain surgery.
Let me know if you have any more questions, and I'm wishing you the best!
Thanks so much for the info. Very helpful.
I have only been on Tagrisso for 35 days. I found my skin has dried out a lot and I have lost weight but that has seemed to stabilize.
My problem is, I am not on insurance and have to pay for Tagrisso myself and that's going to come to an end.
I am a Vet but not sure the VA will cover the expense. I have thought abut going to open a Go Fund Me page.