Stopping Tagrisso after 3 years

@divemaster In that case I doubt anyone would recommend stopping Tag. Yes side effects arr often not easy. Is she taking 80mg a day?

@franciekid 40mg

@franciekid Happy for you and your positive outcome. I hope to be on the same path soon.

@franciekid yes. Phoenix.

I have stage 2A EGFR and I just finished chemo round 4, I am about to start Tagrisso 80mg, is there a lot of side effects? I am scared of this whole situation. I would also like to know if their cancer came back on this med. I also have other mutations like TP53. Any advice?

@amareese I’ve been on 80mg a day for almost 3 years. Diagnosed stage 1b. Tag is a miracle drug. I’ve been cancer free since my surgery - partial lobectomy. Had 4 chemo sessions over 12 weeks. Tagrisso definitely has side effects - frequent diarrhea, changes in hair, nails and skin. All manageable. Ask your oncologist or a dermatologist about ways to help alleviate symptoms. I have found them all manageable. I’m 81. Best of luck to you.

@amareese, There are many people here that take Tagrisso. Here are a couple of discussions regarding Tagrisso, but keep in mind that everyone doesn't experience all side-effects.
https://connect.mayoclinic.org/discussion/tagrisso-question-if-you-take-it/
https://connect.mayoclinic.org/discussion/side-effects-from-tagrisso/
Also, I believe @lijda is TP53 and may be taking Tagrisso as a post-surgery targeted therapy. @lijda, is that true?

@lls8000
Tagrisso taken as monotherapy does not generally provide the same benefit for patients who have a TP53 co-mutation. However, the FLAURA2 clinical trial shows that using platinum-based chemotherapy as concurrent treatment with Tagrisso yielded much better outcomes in patients with a TP53 co-mutation, doubling the median progression-free survival in TP53-mutant patients in one study. I don’t know the significance of having done chemo before starting Tagrisso but the recommended regimen for combining chemo with Tagrisso is typically:
• Initial phase: Tagrisso taken daily plus pemetrexed and platinum-based chemotherapy (carboplatin or cisplatin) every three weeks for four cycles.
• Maintenance phase: Tagrisso taken daily plus pemetrexed every three weeks until there is progression or intolerable toxicity.

Which chemo drugs have you had? How would your prior chemo treatment affect the preceding regimen? You’d have to talk to your oncologist (and maybe get a second opinion). It sounds like you tolerated chemo well, and that might color your decision.In terms of Tagrisso side effects, they are generally more tolerable than chemo. You have done chemo so I would expect you could tolerate Tagrisso.

Tagrisso did not work for me. I do have the TP53 mutation as well as EGFR exon 21 L858R. My most troubling side effect with Tagrisso was leg cramps, which improved when we cut my dose to 40 mg.

I wish you the best of luck. These decisions are very difficult. I’m currently revisiting treatment decisions (more appointments! more tests!), which is why my response has been slow.

@lijda were you stage 1? I think the question was for Stage 1.

@whahoo Excellent distinction. The combination treatment is targeted for locally advanced (Stage IIIB–IIIC) or metastatic (Stage IV) nonsquamous NSCLC. For prior stages, chemotherapy followed by Tagrisso is the common strategy. I need to update my post to clarify (hopefully tomorrow). I am stage 4.