Anyone taking Tagrisso for Lung Cancer?

I found this thread helpful seeing what others have been experiencing and some of the longer term success that many have had. I was diagnosed with adenocarcinoma over a year ago. Luckily I have the EGFR mutation and I've been on Tagrisso for a little over a year now. I also have infusions of pemetrexed and initially carboplatin every three weeks. I saw a slight decrease in tumors at my initial scan and now every scan since than has been stable. My first two months or so of treatment was just Tagrisso. I didn't notice any issues initially but the occasional diarrhea, but nothing too bad. Now I'm pretty tired feeling most of the time but I am guessing that is from the pemetrexed and not the Tagrisso. I'm still able to do all of my hobbies and most of the time when I get moving it gets easier. One issue I've been having is high liver enzymes, they are always above normal and have seen them as high as double the max range, has anyone else had liver enzymes above normal? I worry that I might have caused some damage prior to my diagnosis. I spent a year in agony with horrible headaches from the cancer. Weekly ER visits because of the headaches and they finally found something that worked some of the time(indomethacin) but after taking it for a month I was told it was bad for my liver as much as I was on and for how long. They advised I not take any more indomethacin but as my only relief from unbearable pain I continued. Finally I got a second opinion at Mayo about the headaches and within hours they found the cancer causing the pain with an MRI of my brain. Thankfully, I finally got a second opinion at Mayo in Rochester. Anyways, from what I understand Tagrisso will only last into my early 40s before I need to try something new. Trying to stay optimistic that something will be available when things start going the other way, that's probably the hardest part.

Tagrisso is an amazing drug from my experience. I have EGFR NSCLC and have been on Tagrisso for about 1 1/2 years. There is a Facebook page called EGFR resisters that is a good support group. Good luck.

I was told that I can't take any immunotherapy drugs after my adverse reaction to Tagrisso. I am now a "wait & see" I have pet scan next week to see if there's anything new or my cancer is stable. Terrible way to live

@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.

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.

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!

That’s NSCLC - non small cell lung cancer. Sorry, typo.

May I ask your current condition?