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Anyone experience GI side effects with Tagrisso for lung cancer?

Posted by sunnygirl @sunnygirl, Mar 28, 2022

Hello,
Has anyone out there receiving Tagrisso for their lung cancer treatment experienced GI problems? For example bloating 24/7, appetite loss, heart rate elevated when eating, stomach pain. My husband is experiencing all of these after being on Tag for six months. Not sure if it warrants a visit to the ER. Currently have a message into his oncologist.

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babs1956 | @babs1956 | Jul 4, 2024

I’m sorry to to hear about your husband. I’ll be starting it very soon, but if I have the same symptoms, I’m going off it immediately. Thank you for the info. I wish your husband lots of good luck.

REPLY
denzie | @denzie | Jul 5, 2024
In reply to @stefan "My mother has lung cancer with metastasis to her brain. She has been stable on Tagrisso/osimertinib..." + (show)
@stefan

My mother has lung cancer with metastasis to her brain. She has been stable on Tagrisso/osimertinib for 11 months without many side effects besides the common nail issue and diarrhea. She is now suffering from severe stomach issues: she has difficulty eating and drinking and is nauseous almost 24/7. She explains the pain as if there is a band around her stomach that is increasingly tighter.

We've performed many different tests: MRI (with and without contrast) , CT, gastrointestinal tests, lab tests of stomach tissue, fluids, bloodwork. Nothing shows that the cancer has spread to her stomach, or other parts of the body. We've also excluded issues on the spine, and are waiting for results of a lumbar punction.

There is no indication that there is something directly related to her stomach, and yet she keeps saying the pain comes from there.

We've tried pretty much all logical medication: anti-nausea medication and various painkillers (such as Morphine and Fentanyl).

The next step is that we will suspend the Tagrisso/osimertinib for a week to see if her situation improves. It feels like a scary situation, but current quality of life is simply too low to not try it.

I will keep you posted if they find anything, but if anyone has suggestions, please let me know :/

Jump to this post

Talk to the doctors about a dose reduction in her tagrisso first. Dose reductions have made huge differences for others who have talked about it at the EGFR Resistors Facebook page.

Edit to add that improvements are something very swift.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 9, 2024
In reply to @stefan "My mother has lung cancer with metastasis to her brain. She has been stable on Tagrisso/osimertinib..." + (show)
@stefan

My mother has lung cancer with metastasis to her brain. She has been stable on Tagrisso/osimertinib for 11 months without many side effects besides the common nail issue and diarrhea. She is now suffering from severe stomach issues: she has difficulty eating and drinking and is nauseous almost 24/7. She explains the pain as if there is a band around her stomach that is increasingly tighter.

We've performed many different tests: MRI (with and without contrast) , CT, gastrointestinal tests, lab tests of stomach tissue, fluids, bloodwork. Nothing shows that the cancer has spread to her stomach, or other parts of the body. We've also excluded issues on the spine, and are waiting for results of a lumbar punction.

There is no indication that there is something directly related to her stomach, and yet she keeps saying the pain comes from there.

We've tried pretty much all logical medication: anti-nausea medication and various painkillers (such as Morphine and Fentanyl).

The next step is that we will suspend the Tagrisso/osimertinib for a week to see if her situation improves. It feels like a scary situation, but current quality of life is simply too low to not try it.

I will keep you posted if they find anything, but if anyone has suggestions, please let me know :/

Jump to this post

@stefan, just checking in. How is your mom doing? How are you doing?

REPLY
helen1000 | @helen1000 | Jul 10, 2024

Yes my mother did. She took creon, a medication/enzyme and that helped her a lot. She passed away in 2022 peacefully with all family members around at home. I took care of her four years along with her journey. I hope this is helpful to your husband.

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Matthew K | @flusshund | Jul 11, 2024

@sunnygirl, how is your husband doing? I know from personal experience that living with digestive issues can be very unpleasant.

I haven't seen anyone else say it, so I'll point out the obvious: ask your oncologist for a referral to a gastroenterologist. Not everything that pops up while on Tagrisso results from being on Tagrisso. That's one of the challenges. Tagrisso has a phenomenal track record for preventing and eliminating certain types of lung cancer, so eliminating it or reducing it should not be chosen lightly. I hope both or you are doing well.

REPLY
trojaneen | @trojaneen | Mar 19 1:04pm

My husband had a heart attack 4 days after starting it. The side effects were so minimal that we didn’t think they were a problem until after he died. In hindsight, his breathing occasionally changed, he had a slight cough, his appetite reduced and he had more trouble moving. Again, these were minimal, and similar to pre-existing conditions. I believe he was having some brain fog as well. He didn’t mention any changes in how he was feeling, but it’s quite possible that he wouldn’t have.
I called his oncologist’s office to report his death, but no one called back. I feel certain that more people are dying that go unreported.
We were hoping for a miracle drug, but got the opposite.

REPLY
1 reply
vking | @vking | Mar 20 9:16am

Yes, I had GI issues from Tagrisso. I could eat breakfast and lunch but could not eat dinner. It felt like my stomach was full of gas and I wanted to burp but could not. I was taking my Tagrisso after lunch. I moved it to 8 PM after dinner and it was better. I also had acupuncture treatments on the Stomach meridian and that really helped.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | 6 days ago
In reply to @trojaneen "My husband had a heart attack 4 days after starting it. The side effects were so..." + (show)
@trojaneen

My husband had a heart attack 4 days after starting it. The side effects were so minimal that we didn’t think they were a problem until after he died. In hindsight, his breathing occasionally changed, he had a slight cough, his appetite reduced and he had more trouble moving. Again, these were minimal, and similar to pre-existing conditions. I believe he was having some brain fog as well. He didn’t mention any changes in how he was feeling, but it’s quite possible that he wouldn’t have.
I called his oncologist’s office to report his death, but no one called back. I feel certain that more people are dying that go unreported.
We were hoping for a miracle drug, but got the opposite.

Jump to this post

@trojaneen, I'm sorry to hear of your husband's experience and his passing. Thank you for sharing his story and adding the details of what to watch for in the early days of starting the targeted therapy. Even if he did experience symptoms, it's easy for us to minimize changes when we don't feel well to begin with and when we're starting a new treatment. We expect to experience some side effects and try to 'tough it out' when there is hope for more time. I'm sorry that the treatment didn't go well.

For others reading this, Tagrisso adds the following as serious heart related side effects to watch out for: feeling like your heart is pounding or racing, shortness of breath, swelling of your ankles and feet, dizziness, feeling lightheaded, or feeling faint.

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