Anyone taking Tagrisso for Lung Cancer?

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.

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

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

@codym, oncologists are divided on this issue of discontinuing Tagrisso. I've been on it for over four years and have a friend who has been on it for over seven. Our oncologists both feel that as long as it's working, they will keep using it, which makes sense to me. Why stop a treatment that's working?

If you want to stay current on the latest research, join the International Association for the Study of Lung Cancer at iaslc.org. It's the world's most extensive collection of thoracic oncologists, radiologists, etc., and is over 50 years old. You qualify for a free membership as a lung cancer survivor. They have hundreds of educational courses, podcasts, and simulations available online. Plus, once you're on their email list, you'll get announcements of the latest studies describing what's working today. Total disclosure: I'm not only a member but also a patient research advocate and advise researchers on the patient/caregiver/community perspective.

My oncologist and my current plan is to switch to Amivantamab and Lazertinib if and when Tagrisso stops working. You should also know that this is our 3rd plan in the last 3 years, as the lung cancer research community is finally getting enough funding to make regular progress and new discoveries.

So there are two good reasons not to worry! Years ago, I decided I would not live as if I knew the expiration date because that's no way to live. For the most part, I'm able to live my life with no thought of lung cancer at all. I highly recommend it!

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.

Thankyou it’s great to be able to take part in these discussions. I started taking supplements when I got my cancer diagnosis while I waited for treatment and to try and help myself stay strong. However I appreciate the fact that I can take Tagrisso and immediately stopped the supplements in case they interacted with Tagrisso. I’m also interested in what vitamins and supplements others take and what effects they have on treatment and or the body.