Starting Tagrisso: What time of day do you take it? With food?

Thank you for the positive inspiration! I agree I have read so many peoples comments on being on this long term. I have also started Biotin and have had no nail issues. My biggest complaint is the dry skin. And if that is the worst of it I won’t complain. Thanks!

@mmusselman01, poppycock. Trials have restrictions to get solid, publishable results and set a baseline for future trials. That's why they typically look out for 3 years. Once they are more developed, they may look out for 5 years or more.

I'm still on Tagrisso after 4 years with no progression, and I have friends who have been on it for 7 and 8 years. I choose not to live my life by the odds but by hope, determination, and a sense of optimism.

Regarding nails, skin, and hair, I've increased my Biotin intake to 20 mg a day. As a result, my nails are stronger, my skin looks better, and my hair is growing like a weed! That's now my newest challenge, as I feel like I have to trim my nails every other day! My oncologist says that Biotin doesn't interact with anything I'm on (Tagrisso, Eliquis, prescription-strength Nexium, Fludrocortisone), but be sure to check with yours.

@majoza, I'd like to add my welcome. I wonder if you might find some helpful tips about managing weight loss during treatment in this related discussion:

- Eating during cancer care
https://connect.mayoclinic.org/discussion/eating-during-cancer-care/
It's so hard to eat when one can't taste. Is your mom able to drink Ensure or other high calorie drinks? Have you talked with an oncology dietitian?

Welcome to Mayo Connect @majoza. I take a different targeted therapy and I did experience a change in taste early in my treatment, but it resolved after a few months.
I'm sorry that your mother is experiencing this. Food can be such a joy for many people, it has to be difficult to force yourself to eat. I'm assuming that you've consulted with her oncologist, and possibly a dietitian.
There are many Connect members taking Tagrisso, but I haven't heard of this as a long-term side effect. Did her doctor indicate if this is more rare or are my anecdotal observations not correct?

Has he lost his taste buds? my mother has been on tagrisso for a couple of years and weight loss is our biggest problem.

Hi Lisa @lls8000, thank you for the response and positive reminder! I have my first scan Dec. 29th so we will see. No side effects so far but have only been on Tagrisso for 5 weeks. I agree so much advancement has been made.

Hello Maureen, @mmusselman01, I'm sorry to hear that you are stage IV. There are too many of us! I'm stage IV, ALK positive, similar to EGFR but a different cell mutation.
When you or your doctor talk about the statistics, remember that they are just statistics, there are many people that are out-living those statistics. The numbers are lagging behind the reality of today. In the ALK world, the people diagnosed this year have access to treatments and drugs that didn't exist when I was diagnosed 4 years ago. Likewise the people in the statistics didn't have access to the same drugs that have been successful for me.
Keep up the positive outlook, try to find an oncologist that is knowledgeable and keeps up to date with the latest in research. Our lives depend on it.
Have you had your first scans after starting the Tagrisso? Are they showing improvement or stable status?

Maureen,
You may also be interested in connecting with other members who have the EGFR mutation in these related discussions:

- Lung Cancer EGFR Mutation Stage 4: What treatments did you have?
https://connect.mayoclinic.org/discussion/newly-diagnosed-lung-cancer-egfr-mutation-stage4/
See all: https://connect.mayoclinic.org/group/lung-cancer/?search=EGFR%20&index=discussions

I am told because it went from my right to left lung it transferred through the blood stream so considered advanced or stage IV. I also have Exon 19, we need to find a better club! 😂 sometimes I feel very optimistic and then other times I read more about the trials and think is the best i can do 3 to 5 years?? Trying to stay positive and grateful for everyday.

@mmusselman01, I'm glad your body is handling the Tagrisso well! However, I'm confused by the stage IV diagnosis. My understanding is that stage IV means that the lung cancer has spread to another organ. Even if it was widespread through the lungs, it should still be stage III.

Do you know which EGFR mutation you have? I have the Exon 19 mutation, also known as Exon 19 deletion. Welcome to the club no one wants to belong to!