← Return to Has anyone taken the targeted therapy osimertinib (Tagrisso)?

Discussion
Comment receiving replies
@tjarvis1

my oncologist informed me that there are original tagrisso trial participants that are still on tagrisso 8 years down the road. i will assume these people are overall healthy. i was healthy with no health problems and/or co-morbidities when i was diagnosed. since then, i have completely stopped drinking alcohol and always make sure i am eating very healthy. my oncologist used to be pessimistic and/or never said much in terms of my treatment. now he is way more optimistic than i actually am. the clinical trial that is ongoing may be only in phase 2 trial, but it will target all mutations along the egfr protein line. i am l858r. tagrisso was the first drug to completely cross the blood brain barrier and target the t790m mutation. this new drug will be a complete game changer because of it's ability to target all mutations along the egfr line. also, when i first started tagrisso, i was also tiring easily and exhibiting chest tightness due to my erratic heart rates. i have had numerous ekgs and a 48 hour holter monitor showed no arrthythmias. i still to this day occasionally, and for no apparent reason, my heart rate can shoot to the 140 range at the drop of a hat lasting only around a minute or two then immediately fall back to the 70s range. i use a pulse oximeter to measure the rapid rise and fall of my heart rates. i just recently had a severe bout of digestive issues, which i am attributing to possible long term tagrisso. next week i am going in for my chest ct, but a abdominal series was added with barium to rule out anything that could possibly be suspicious. do not worry that the tagrisso will stop working. sounds like your husband is going through the 'normal' process and side effects of tagrisso. one only hopes that the side effects are not severe enough to warrant removal from this drug. i started on a clinical trial and was in the control arm 'tagrisso only' participant with the addition of avastin being the other arm. so i have only known tagrisso since being diagnosed. i never had traditional chemotherapy. of course, my immune system is shot, just like traditional chemo, but i wear masks in any social situations and am as careful as humanly possible in order to not get sick. teresa

Jump to this post


Replies to "my oncologist informed me that there are original tagrisso trial participants that are still on tagrisso..."

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!