Anyone experience GI side effects with Tagrisso for lung cancer?

@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.

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.

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.

@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.

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.

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

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.

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.

I'm sorry to hear that you and your mother are going through such a challenging time. In addition to what I've written above, I've altered my diet. I choose to be gluten-free with my gastro's support. In addition, I've adopted a Mediterranean diet emphasizing fruits and vegetables. For some reason, lettuce salads cause some distress, but spinach salads are fine. I eat way more fish than meat, and most of my vegetables are cooked. Before I figured all this out, I had undiagnosed cramping and nausea for 9 months and would do a BRAT diet for a couple of days every so often.

Does she react to certain foods, or is it all the time like it sounds? Is the pain in her stomach or lower in her colon?

You're in a tough situation. It sounds like you're keeping in close touch with her oncologist, which is always the best idea. I hope you and her situation improve.

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 :/