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@flusshund

Glad to hear you are doing so well! I know 2 men who have been on Tagrisso for over 7 years and are doing fine. I just saw one of them last night at GO2's monthly "Raising Hope" Zoom call and he is energetic and still helping the newly diagnosed.

My story indicates we need to be careful about blaming Tagrisso for all our other problems. Tagrisso only makes us mildly immune-suppressed, which, nonetheless, makes us susceptible to digestive issues. However, once my Oncologist sent me to a Gastroenterologist, he found that my reflux was caused by Barrett's Syndrome and my bowel problems were caused by microscopic colitis. I was on a corticosteroid for a couple of months that cleared up the colitis, and I still start each day with prescription-strength Nexium, which has cured my stomach problems.

In the past, I thought my restless leg syndrome might have been due to Tagrisso, but it turned out that I had low iron levels as a result of taking Nexium! I had a couple of injections over a year ago, and my iron levels are still good.

In short, bring these problems up with your primary care physician and Oncologist, as they may have ideas that can help you. I'm lucky in that, in my case, these two doctors know each other and share opinions before telling me what to do. I hope you and I and others also make it 8 years and beyond!

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Replies to "Glad to hear you are doing so well! I know 2 men who have been on..."

yeah!! i am so glad to hear others are doing so well on tagrisso also. i almost thought i was in a very small minority. i am having a cat scan of my abdomen with barium tomorrow. you are right, i shouldn't blame every symptom on tagrisso, but there is really no way of knowing what long term effects tagrisso may have on those who have been on this medication for over a year. what i am finding is that side effects differ for everyone taking it. new side effects pop up with people newly starting on tagrisso. accelerating heart rates wasn't one of those side effects at the time my symptoms came into play after being on tagrisso for a couple of months. it is not listed as a common side effect, but is now listed as a rare side effect. if my barium scan comes out clean, the only thing to blame would be the tagrisso. i have not had any symptoms since cutting my 80mg in half for a few days and starting on prilosec. i have had just about every lab test imaginable, which all come out clean except for a critical or almost critical level neutrophil count, that is definitely caused by the tagrisso. be thankful if your immune system isn't completely or almost completely shot like mine is. for the most part, i have somewhat become a social hermit or always masking up because i do not want to become sick. one bout of covid sent me packing to the emergency room when i experienced pressure behind my right eye and the thought of brain edema was a real threat. everything was clean on the scan, but still scarred me for life. i was a registered nurse for 30 years. my oncologist is definitely a keeper because he is now attending lung cancer seminars and conventions in order to learn as much as he can, but there are still times i am making the suggestions on what needs to be done. we will make it to 8 years and beyond. there will be even a better drug on the market or even a cure by then. i was told that if i would have come to the oncologists 5 years prior when i was diagnosed, they would have given me six months to live. i was preparing myself for dying until the craniotomy basically saved my life in more ways then one. teresa