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Side effects from Tagrisso ?

Posted by sierranevadagal395 @sierranevadagal395, May 12 2:31pm

I've been taking Tagrisso since mid-March after my partial lobectomy in February. Thankfully, the cancer was Stage 1B so no chemo or radiation... just the Tagrisso.

For those of you who take Tagrisso, how long did you experience side effects? Diarrhea is the most unpleasant side effect and hope that I won't have to take Imodium for the duration of my treatment.

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nanajan26 | @nanajan26 | May 13 11:24am

I was on it for 7 weeks and developed pneumonitis & had to stop taking it. I had stage 3 with 6 chemotherapy & 30 days of radiation. I was cancer free in February but have another scan next month. I can't take any immunotherapy drugs. I would be grateful if I could have stayed on it and had mild side effects. The odds aren't good for me.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | May 13 1:15pm

Hi @sierranevadagal395. Welcome! There are many Mayo Connect discussions regarding Tagrisso in the Lung Cancer group. Here's a link to a specific discussion, and another to some search results:
https://connect.mayoclinic.org/discussion/tagrisso-and-diarrhea/
https://connect.mayoclinic.org/group/lung-cancer/?search=tagrisso#discussion-listview
I take a different targeted therapy (alectinib for ALK mutation). In my experience, and confirmed by many Tagrisso members, side effects can diminish over time but some sick around for the long haul. Everyone's tolerance for these drugs is a bit different. The GI issues can be difficult to deal with. After 5 years on alectinib, I still struggle for find the right balance. Does the Imodium help when you take it? I tried talking with a dietician to address the issues, it was somewhat helpful for me.

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whahoo | @whahoo | May 13 4:50pm

I was diagnosed 1B in March 2023. Right upper lobe removed April 2023. Started 80 mg Tagrisso and had bad side effects. Dr dropped me to 40 mg and it’s much more tolerable.

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Matthew K | @flusshund | May 14 8:29am

@sierranevadagal395, I was diagnosed with the EGFR Exon 19 mutation, Stage 2b, in 2018. In 2020, my cancer metastasized to my brain, and I had brain surgery, radiation, and started taking Tagrisso, 80mg, daily in December 2020. I'm still taking it daily.

I initially was taking 2 Immodium a day to control the diarrhea. After a couple/few months, I dropped to one a day and eventually stopped altogether. Now I take Metamucil every morning to stay regular!

The next most commonly reported side effect is a skin rash, but I've only experienced that once in the last four+ years. My dermatologist prescribed a cream that eliminated the rash within days.

The most persistent side effect I still experience is nail splitting. I take 20 mcg daily which keeps that under control. Since Biotin is also good for hair and skin, one side effect is that I have to shave and trim my nails a lot more often! My oncologist assures me Biotin doesn't interfere with any medications I'm taking, but you should check with yours before taking anything regularly.

Oh, and early on, I had to take Tagrisso away from food: at least 2 hours before and after eating, or I my stomach would object. Over time, that side effect has also gone away.

As a guy, one warning with Tagrisso is to not get anyone pregnant for 4 months after stopping, so I'm guessing that's about how long it takes the average body to adapt. But every body is different.

Hang in there. The side effects do wear off with time.

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1 reply
sierranevadagal395 | @sierranevadagal395 | May 14 9:34am
In reply to @flusshund "@sierranevadagal395, I was diagnosed with the EGFR Exon 19 mutation, Stage 2b, in 2018. In 2020,..." + (show)
@flusshund

@sierranevadagal395, I was diagnosed with the EGFR Exon 19 mutation, Stage 2b, in 2018. In 2020, my cancer metastasized to my brain, and I had brain surgery, radiation, and started taking Tagrisso, 80mg, daily in December 2020. I'm still taking it daily.

I initially was taking 2 Immodium a day to control the diarrhea. After a couple/few months, I dropped to one a day and eventually stopped altogether. Now I take Metamucil every morning to stay regular!

The next most commonly reported side effect is a skin rash, but I've only experienced that once in the last four+ years. My dermatologist prescribed a cream that eliminated the rash within days.

The most persistent side effect I still experience is nail splitting. I take 20 mcg daily which keeps that under control. Since Biotin is also good for hair and skin, one side effect is that I have to shave and trim my nails a lot more often! My oncologist assures me Biotin doesn't interfere with any medications I'm taking, but you should check with yours before taking anything regularly.

Oh, and early on, I had to take Tagrisso away from food: at least 2 hours before and after eating, or I my stomach would object. Over time, that side effect has also gone away.

As a guy, one warning with Tagrisso is to not get anyone pregnant for 4 months after stopping, so I'm guessing that's about how long it takes the average body to adapt. But every body is different.

Hang in there. The side effects do wear off with time.

Jump to this post

Appreciate you sharing your cancer journey... and the tips for handling the diarrhea.
May you continue to heal and enjoy your life!

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tedvoelker | @tedvoelker | May 14 5:39pm
In reply to @nanajan26 "I was on it for 7 weeks and developed pneumonitis & had to stop taking it...." + (show)
@nanajan26

I was on it for 7 weeks and developed pneumonitis & had to stop taking it. I had stage 3 with 6 chemotherapy & 30 days of radiation. I was cancer free in February but have another scan next month. I can't take any immunotherapy drugs. I would be grateful if I could have stayed on it and had mild side effects. The odds aren't good for me.

Jump to this post

The worse side effects I’ve had on Osimertinib has been an upper body rash. I’ve been taking this medication for the past 15 months.

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