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.

@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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Thanks so much for your advice. Meeting with the oncologist next week. See what he may suggest

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@conyankee

My wife started Tagrisso (80mg) about 2 weeks ago. Side effects include nausea, vomiting, extreme fatigue, occasional diarrhea. Taking anti-nausea med. & Imodium. No for diarrhea. No fever. Any suggestions on how to we can mitigate these side effects?

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@conyankee, see my earlier reply. Like your wife, when I first started Tagrisso, I was taking 2 Imodium a day and an anti-nausea med, though I was able to get off that quickly. My experience is that, initially, at least, Tagrisso doesn't like food. I took it at least two hours before AND after a meal. Some people take it right before going to bed. That wasn't an option for me, but it could be a good idea.

As far as fatigue is concerned, as much as I hate and rebel against the phrase "the new normal," welcome to the new normal. I try to walk a couple of times every day to keep moving. Other than that, I know that some people have trouble sleeping at night. One advantage of cancer is that now I enjoy a long, sound sleep every night! Look on the brighter side of life!

The good news is that your wife's body WILL adapt to the Tagrisso. As a 60-years-young guy, I was warned against getting anyone pregnant for up to four months after stopping. After my wife stopped laughing, we realized that if it took that long to wear off, it probably took that long to adapt to it. And that was the case for me. I've been on it for three and a half years now, and the only side effect is nail splitting and chipping. I regulate that with 10 mg of Biotin daily.

If medical marijuana is an option in your state, a low dose, such as 5 mg daily in a gummy, will help with the nausea. Not an option in my state, but my friends in other states report positive results.

Best of luck to you and your wife. Being the caregiver is also hard. Be sure to take care of yourself as well as her. Learn a lot of jokes, even corny dad jokes. It helps.

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@conyankee

My wife started Tagrisso (80mg) about 2 weeks ago. Side effects include nausea, vomiting, extreme fatigue, occasional diarrhea. Taking anti-nausea med. & Imodium. No for diarrhea. No fever. Any suggestions on how to we can mitigate these side effects?

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I started Tagrisso Six weeks ago and I’m doing well on it 80 mg. My doctor said If I had problems like diarrhea, nausea would reduce the milligrams to 40 Maybe you should tell your doctor if you have already I wish you so much good luck

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@conyankee

My wife started Tagrisso (80mg) about 2 weeks ago. Side effects include nausea, vomiting, extreme fatigue, occasional diarrhea. Taking anti-nausea med. & Imodium. No for diarrhea. No fever. Any suggestions on how to we can mitigate these side effects?

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Welcome to Mayo Connect @conyankee, it looks like you've already received some great advice from some of our other Tagrisso users.
I've been taking a different targeted therapy (for an ALK mutation lung cancer), and my side effects did diminish after the first month. I've been on that one for over 4 years now, and still experience some minor side effects, but they are manageable.
Your wife is fortunate to have you at her side and advocating for her.

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My wife had a serious side effect after starting Tagrisso. Heart rate shot up to 152. Was hospitalized @ found blood clot in lower right lung. Was released with blood thinner and med to regulate heart rate. Doctor believes blood clot caused increased heart rate which in turn caused nausea & extreme fatigue, not the Tagrisso. Just to be safe, he reduced Tagrisso dosage from 80 mg to 40mg.

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@conyankee

My wife started Tagrisso (80mg) about 2 weeks ago. Side effects include nausea, vomiting, extreme fatigue, occasional diarrhea. Taking anti-nausea med. & Imodium. No for diarrhea. No fever. Any suggestions on how to we can mitigate these side effects?

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For what its worth i find Pepto bismol gel filled caps to be more effective than Imodium

I also find this ginger tea with a heaping teaspoon of honey to be very effective at mitigating GI distress and inflammation. I steep two tea bags and add the honey and have 3-5 cups a day. Not the yummiest but you get used to it and it really does help. Fyi The stuff in the grocery store is worthless.
https://www.amazon.com/your-orders/pop?ref=ppx_yo2dv_mob_b_pop__np_4_pp&orderId=111-8511456-0559412&lineItemId=jgnglwllrrsrsqps&shipmentId=GhNw58vV7&packageId=1&asin=B07SQX3853

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@pb50

For what its worth i find Pepto bismol gel filled caps to be more effective than Imodium

I also find this ginger tea with a heaping teaspoon of honey to be very effective at mitigating GI distress and inflammation. I steep two tea bags and add the honey and have 3-5 cups a day. Not the yummiest but you get used to it and it really does help. Fyi The stuff in the grocery store is worthless.
https://www.amazon.com/your-orders/pop?ref=ppx_yo2dv_mob_b_pop__np_4_pp&orderId=111-8511456-0559412&lineItemId=jgnglwllrrsrsqps&shipmentId=GhNw58vV7&packageId=1&asin=B07SQX3853

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The link doesn't seem to work. Can you give the name of the tea. Thanks

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@conyankee

The link doesn't seem to work. Can you give the name of the tea. Thanks

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See picture i inserted

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@pb50

See picture i inserted

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Thank you. Will give it a try

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@conyankee

Thank you. Will give it a try

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I steep two tea bags in morning and sweeten with manuka honey or at least honey local to your locale. After that initial cup, I throw one tea bag away and add one and sip on it most of the day.

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