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

Posted by dragonspark @dragonspark, Nov 28, 2023

I will be starting Tagrisso soon. The pharmacy is sending it to me and I should receive it tomorrow. I am supposed to let my oncologist know when I start it.

The pharmacist told me to take it with or without food did but just be consistent. For those of you that take it, when do you take it? In the morning? When you go to bed? With food? Without?

Just curious for others experiences. I’m not sure if it’s true, but in another social media platform group I’m in, someone there claims cancer cells are more active while you sleep but I’m not sure I want to take it at night when I go to bed in case I have side effects.

Also, how quickly did you experience side effects and what were they? And what do you use to manage them?

Thanks!

Interested in more discussions like this? Go to the Lung Cancer Support Group.

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

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Profile picture for majoza @majoza

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

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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?

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Profile picture for majoza @majoza

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

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@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?

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Profile picture for Maureen @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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@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.

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Profile picture for Matthew K @flusshund

@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.

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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!

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Profile picture for dragonspark @dragonspark

@conyankee I’m not sure I have any advice other than letting the oncologist know about the side effects. When I first started taking Tag my oncologist told me to message them any time I had side effects. Initially, that was rash, fatigue, diarrhea., and nail issues. They prescribed me something for the rash. Other than that they told me to manage the symptoms with Imodium and aquafor for nails. I also take biotin everyday for nails. It help’s. I still have all of those symptoms but they are milder and less frequent.

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@dragonspark
I, too, have been managing with Imodium and Aquafor. But the stomach cramps often come from out of nowhere, at any time. Any suggestions appreciated on way to avoid this unknown timing?

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Profile picture for nanco88 @nanco88

@dragonspark
I, too, have been managing with Imodium and Aquafor. But the stomach cramps often come from out of nowhere, at any time. Any suggestions appreciated on way to avoid this unknown timing?

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@nanco88 I haven’t really experienced stomach pain or cramps. A heating pad might help? I’m sorry you’re dealing with that. How long have you been taking it? I’m going in 2 years and find most of my symptoms have subsided and are very infrequent now. It does get better. Hugs to you!

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Profile picture for troubletwo @troubletwo

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.

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@troubletwo
Going forward with 5 years approaching since his one lobe removed in one lung and the other lung had radiation. Tumor with lobe removed was given Tagrisso for 3 years. Have now been off the pills and did have a biopsy, November 2025 on the original right radiated lung spot, with now 2 spots (only one of two got biopsied to find that it was a difference cancer than the other lung biopsied with tumor in one lobe removed 4 years ago that was treated with Tagrisso pills.
Another enhanced CT Scan on the 14th of this month to see how the Nov. radiation went and also to monitor size of another right lung spot in the making. Apparently having the CT Scan of his lungs, chest and abdomen it appears at this time that the cancer is contained to the lungs only and so far those biopsied are of different cancers. A puzzle with no answers?? No additional meds for treatment have been given for the past 2 years, so ????

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I’m fighting stage 4 Metastatic Lung Cancer. Since taking Tegrisso, results have been tearfully amazingly effective.

When first prescribed, I took Tegrisso in the morning. However, within forty five minutes of taking the medication, my ankles and calves began to swell. The Kimmel Medical Team suggested that I take at night and elevate my legs. Gradually, increasing time by one hour a day, until I reached 8pm, I continue to take the medication at 8pm without food. The swelling of calves reduced by 80%; ankles continue to swell till I walk around in the morning.

Lack of taste, diarrhea, very dry skin, splitting finger nails, swelling of ankles and calves, … are all tolerable because prior to the medication, I was in extreme pain from a metastatic lesion in my hip.

Diarrhea subsided dramatically after about eight months. I use 1% (half tablet) of Imodium A-D. I used wooden cutlery for several months because silver and stainless steel cutlery left extreme metallic taste in my mouth.

Within six weeks of taking Tegrisso, pain was dramatically reduced and within an additional six weeks, pain was eliminated. Discomfort occurs occasionally.

Wishing you the best.

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I, too, have been diagnosed with Stage 4 metastatic non-small cell lung cancer. I take Tagrisso (80mg) at night. I personally designated 7:30 p.m. as that time. Some nights, it might be 7:15 p.m., other nights 8:10 p.m. But having a dedicated time that I take the medication helps me remember to take it. Plus, I have a Post-It taped to a cereal cannister on my kitchen counter with "7:30 p.m." in heavy magic marker. (Visuals help me remember.) I take it with/without food. So far, so good. I've been on it since Dec. 9, 2025, and have not missed a dose.

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