Has anyone taken the targeted therapy osimertinib (Tagrisso)?

The concern is always that there are cancer cells somewhere else in the body that just haven't grown large enough to be detected. That's a serious concern for me after my lung cancer metastasized to my brain. That metastasis "only" affected some of my muscles, but if the cancer came back in a random part of the brain, it could be much worse.

My doctors can tell it's working by the fact that I haven't had a recurrence anywhere else! I'm up to 3 1/2 years, and I know someone else on Tagrisso who is 7 years past detection. I hope your husband goes at least as long!

I'm still getting tested every 3 months. Do you know your husband's schedule?

Welcome to Mayo Connect @maggieoakdavis. Wishing your husband a long run on Tagrisso! I take a different targeted therapy for a different mutation, and I have scans ever 3-4 months. Does your husband have regularly scheduled scans, CT or PET?

@maggieoakdavis, I've replied privately, but others may benefit from my response. When there has already been metastasis, the concern is that there are still cancer cells out there that are too small to be detected. Tagrisso is prescribed to kill those cells. In addition, chemotherapy does not cross the blood/brain barrier, while Tagrisso does.

My lung cancer might not have metastasized to my brain if I'd been put on Tagrisso after my lobectomy. However, in 2018, Tagrisso had not yet been approved as a first-line treatment. Your husband is proof that the policy has changed!

Thank you @flusshund, it is encouraging that the treatments and protocols are evolving. We will keep the faith!

Thank you all for your encouragement, Yes, he will have every 3 month CT and PET scans @flusshund

how are you doing so far? i have been on it since august 2022 stage 4 with brain mets also. so far, most all brain tumors have shrunk to approximately around 2 mm and so far, no new growth.

I've been on Tagrisso a year and after 8 months, my EKG revealed a QTc issue. It's been decreasing (my oncologist is happy), but I don't know if I did anything to make it go down. If I did, I'd sure like to know what so I can keep on doing it. EKG is measuring the electrical system and I've been told that there isn't anything we can do to impact it. Is that so? Anyone else seeing QTc problems in their EKG test results?

i haven't seen QTc problems in any ekg's i have had. my problem is heart rate acceleration for no reason other than the tagrisso causing it. i mean i can go from the 60's range to all of a sudden 140's range with no warning at all. it is not an arrhythmia and this was a lot worse during the first 8 to 10 months of taking tagrisso. there is nothing you can do to decrease the heart problems. every once in a while i still can zoom up to 140 or more, but i rest, take deep breaths and at this point in time, it usually only lasts seconds to a couple minutes at a time. i have cut my dosage down to 40mg for a few days if things were to really get bad enough to warrant a dosage decrease, and since tagrisso has immediate effects, usually a couple to a few days may help the situation. i always let my doctor know i have done this, but i always go back on the 80mg and most of the time the situation is corrected until the next barely tolerable side effect comes along. i have been on tagrisso for almost two years and the side effects do not occur as often, but they still do occur. if your QT issues are resolving, be thankful and rest assure it is solely the tagrisso causing the issue. i know at times they will do a temporary dosage decrease to get you through the more serious side effects. at first my oncologist told me that it won't work, but that was two years ago. the oncologists really do not still know enough about tagrisso nor is there that many people even on it to warrant a complete and accurate assessment of this drug. my oncologist is learning though and i applaud him for all his efforts in attending lung cancer seminars and learning as much as he can about these types of drugs. just be thankful you are still alive and if you are living a full life, that makes it so much better. so far, i live a completely full life, have more stamina then most young people nowadays and i have stage 4 nsclc with brain mets that would have killed me within six months if not for tagrisso. teresa

actually, if this is any help, tagrisso will not kill small cells that are undetected. what tagrisso does, is it renders the protein (egfr) where it will not produce further cancer cells. two years ago, my doctor couldn't give me much information on this drug. for the first around 6 months on tagrisso, my brain cancer tumors were shrinking like crazy. then it stopped completely. the tumors wouldn't shrink any further. so, i am still riddled with about 20 tumors, but they are all measured in mm, not cm and they, so far, after two years are still not growing. i always use the word 'so far' because one cannot estimate when tagrisso will completely stop working and the tumors will start growing again. however, the good news, that was explained to me by my oncologist, is that there is a targeted therapy in clinical trial that will basically target every protein mutation associated with nsclc and hopefully with fewer side effects. teresa

Teresa, my husband is also on Tagrisso and the fear of course is that it will stop working. Are you able to say any more about that clinical trial using a drug that will target all the proteins?

Also, what are your Tagrisso side effects? My husband just started Tagrisso and is sleeping a lot, seems to tire easily and his chest is tight.

Best of luck with everything and let’s hope the drug you are talking about will be available soon!!