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

Hi, my hubby has been on Tagrisso for EGFR protein, left lung that had one lobe surgically removed and unsure of a couple of lobes showing possibilities, so reason for the study of Tagrisso for 3 years which will be up in 15 days, then off the Tagrisso due to it no longer being effective?? No contrast ct scans over the 3 years showed any recurrence of cancer, so perhaps that is the reason for the 3 year term. Tagrisso was taken at 1 pm daily (by choice of convenience), and other than lack of energy, and having to nap once a day after lunch due to tiredness I guess there was no real side effects. At the beginning I felt his skin was extremely dry and his feet could crack and if not drinking his 8 glasses of water a day, rashes could form. Persistently used glazel base cream which has no scent to it and it seemed to do the job. Has a good appetite with smaller portions I am seeing and if not enough food consumed he looses weight real fast. Intake of calories has been so important to keep up his weight as he lost 10 lbs. when lobe removed and has at least put 5 lbs. back on. Don't believe there is any time of day that you can't take Tagrisso, what is convenient and easy for you to remember, just be persistent in following that same time everyday.

Hi you may want to check with your pharmacist on the ginger tea. I mentioned I usually take ginger juice and he told me it has an enzyme that can interact with Tagrisso in the liver. So I stopped, maybe the tea does not have enough of the ginger in it. But always good to ask!

Good to know but I am not on Tagrisso

Hi @mmusselman01, good advice to check with a pharmacist on the ginger tea. I look forward to learning more about you. Would you mind sharing more about your journey with lung cancer?

I just started this journey, was in the ER in June with what I thought was a heart attack and turned out to be reflux but they noticed a spot on my lung. Fast forward to now, I have NSCLC with an EGFR mutation. This has only spread to my lungs but has spread so considered stage IV. I started Tagrisso 22 days ago and so far handling it very well, no side effects so far so I just hope it is doing its thing. Fingers crossed.

Thank you for asking.

@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!

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.

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

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?

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.