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

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@mmusselman01

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.

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Replies to "I am told because it went from my right to left lung it transferred through the..."

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?

@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.