Free to Breathe

Tagrisso Anyone?

This is my 1st post. 1st diagnosed in 4/16 with Stage 3b NSCLC mets to lymph nodes. 6 rounds of Carboplatin/Alimta along with radiation 5xweek for 6 weeks. Pet at end of October showed no active cancer.

June/2017: It's baaack. Lungs, lymph nodes, and now, bone, too. Started Ketruda + Zometa 1st of June last year until December when my oncologist said she couldn't tell whether my tumors were "glowing" due growth or the immune system attacking them. Her options were: 1) Stay on the Keytruda and see what happens. 2) More chemo, 3) do nothing(!). Went to MD Anderson for 2nd opinion and Tagrisso was recommended. Started 1/2018. Any opinions and suggestions are appreciated. Side effects? Scan results since starting? Anything? Anyone?

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Hi,

I was diagnosed Jan 2016, NSCLC, stg 4 mets to everywhere. I've been on Tagrisso since April 2017 and so far so good. Here'a bit of my history for perspective: I have the EGFR mutation, and a high stain rate for PDL1. So my initial treatment was Tarceva (oral chemo), which worked nicely for a while, though lung masses were not breaking up. Then Keytruda, which tackled the lung tumors, tho Keytruda hasn't blood/brain barrier transmission ability and found a brain tumor. Had the gamma knife radiation zapping of the brain spread done, and then started on Tagrisso in April 2017 through now.

For me, the side effects have been minimal and manageable, and Tagrisso is keeping the lid on things. Main challenge for me is pain management of the bone spread, tho am managing that pretty well w pain meds. I was initially on 80mg daily of Tagrisso, it was too much for me (small frame, 5'2", 105 lbs) and it was making me sick every day (vomiting). We changed it to alternating 40mg/80mg doses and that has been working well. My main issues are stomach nausea, lack of appetite, some diarrhea (tho the pain meds seem to counteract that), fatigue. Some folks get a rash or facial acne, though I didn't w Tagrisso. (I did w Tarceva). I've not had any Carboplatin rounds yet, though I think that is next on the docket after this Tagrisso stage.

Hang in there, and good luck, hope this helps. Lu

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Thanks, Lu! I really appreciate your response. I see your side effects from Tagrisso are same as mine. I'm encouraged by the fact that the Tagrisso has been helping you since last April.

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I’ve no personal experience with Tagrisso but a friend has been on it for a year and has been thrilled with the response her cancer has made and the lack of all the side effects she had while on Tarceva.

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Thanks, Denzie! That's encouraging!

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mrjones6, I am so glad you reached out to this community - they are always great with practical advice and caring support. We are very happy to have you here.

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Thank you for welcoming me! Love and support here.

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I definitely have the bone pain, but my Joints are Really painful when I move. My shoulder, hip, knee, and ankle on my left side hurt and are weak. I'm having trouble walking. Does anyone have experience with this? Thanks in advance.

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