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elliottcle

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Hello Survivors, 

I am newly diagnosed with Stage 4 NSCLC Adenocarcinoma (diagnosed July 26, 2021). I'm fortunate to the EGFR Exon 19 mutation and able to start Tagrisso since August 10 as my first line of treatment. I live in the Puget Sound, WA area, single, still working (thankfully). My adult daughter is currently living with me and she is my only family in the area. My supportive siblings are on the East coast and have been wonderful about keeping in touch with me.  I'm still navigating life (current and future) with this disease.  I have my first scans since starting treatment on October 4 so I'm also learning to deal with anxiety.  

I'm glad to have found this group and hope I can provide support and learnings as I get.  Stay safe, stay healthy.

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Welcome here and glad to have another Evergreen State member. I lived in North Bend for 6 years!

Many connected with Lungevity express EGFR Exon 19 mutation and are successfully treated with Tagrisso, and I'm hoping you are joining the pack!

Sadly we all experience scanziety. My last scan in August had a 10-day delay for results, and I thought the wait meant bad news. All kinds of horror stories filled my head and I am nearly an 18-year survivor. So we understand your anxiety. Wish we had a remedy for it.

Stay the course.

Tom

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And a welcome from me too. I am also EGFR Exon 19 and have taken Tagrisso since March 2020 after chemo and radiation. NED since April 2021.

I don't usually mention Tagrisso side effects initially because you may not have any. Mine are manageable and some come and go. 

I do suggest joining the following LUNGevity Facebook support groups:

Tagrisso (osimertinib) Patients & Caregivers Group 

LUNGevity EGFR Group 

LUNGevity Targeted Therapies Group 

LUNGevity EGFR Resisters Lung Cancer Patients Group 

There's lots of valuable knowledge among the members, as well as posts about current research. 

I hope you see some progress on your upcoming scan! 

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Hi from me too. 

I have a different mutation and have been taking targeted therapy for 36 months now, NED.   I do remember the first scan and the anxiety about it.   I was pretty confident the therapy was working because I felt so much better, I was sleeping through the night and those horrible coughing spasms had finally stopped.  This is the first of many scans to come and unfortunately that uneasy feeling never really goes away, however the duration of those feelings does tend to shorten over time.  Back in 2018 about a month before my scan the scanxiety would set in.  Now, it's really only in the days preceding the appointment. 

Once you get the results, keep in mind you will receive them often before your doctor does in the patient portal.  Try to avoid the temptation of Dr Google and let your doctor tell you what their thoughts are.   Often times the oncologist doesn't agree with the radiologist.  It happens more often than you think.  

Please keep us posted. 

Michelle 

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I want to welcome you to the forums as well.  My lung cancer was different and other than being a "former New Yorker" I had no other mutations.  Seriously though, there are a lot of folks here who can share their experiences with you.  I do want to mention something that Michelle said though...it is about reading your own scan results.  There are folks that seem to do that well, but I am not one of them.  there is usually a lot of information there that if you were to look it up once term at a time it would scare the bejesus out of you.  At this point I let my oncologist review all results, do whatever conference he wants to do with the others on my medical team and then explain to me what the results show.  But, as Tom said, Scanziety is real and we all do suffer from it.  But hang in there and come here to "release" whenever you need to.

Lou

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