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

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.

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.

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

@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.

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

@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.

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?

Thank you for your response! Yes very helpful.

Hello dragonspark, I’ve been on Tagrisso for a total of 8 months now (following my chemo treatments). I started at 80 mg/day for about 4 months however I was having such moderate skin reactions (acne-like) that they then lowered my dose to 40 mg. That really didn’t totally resolve the issue until they have switched the antibiotic treatment from doxycycline to cephadoxil (huge improvement!!). I haven’t noted any other adverse effects except for elevated creatinine levels which may be Tagrisso related.
I did a quick review of articles related to cancer cells being more active during our sleep cycles and it appears that there might be something to that. One problem that I could foresee is to remember to take your medication every night……sometimes I just want to get to bed as quickly as I can. I should note that each dose of Tagrisso also stays in your system for a few days (the half life….meaning 50% of the dose….is still in your system after 48 hours, so if you are taking a daily dose you are constantly being exposed to the drug). I hope this helps.

Thank you! Hope long have you been on it?