New patient seeking support and information sharing

[Buckeye_wife]

I'm recently diagnosed with nsclc stage IV, adenocarcinoma, EGFR mutation delete exon 19. I'm taking tarceva which is working on me. I'm joining this group to find support and share information. Thank you!

[LexieCat]

Hi there!  I'm pretty new, myself--just had lung surgery a couple of days ago and confirmed tumor was cancerous, but won't have details on type/stage till pathology reports come back next week.  So I'm not much of one to give helpful advice or even share info at this point, but there are some awesome folks on this list who have been dealing with this stuff pretty successfully for a LONG time.  

Just wanted to greet you and say glad to have you here.

Teri

[Tom Galli]

Welcome!

Glad you joined us.  You'll find this a good place to ask questions.  Also, I'd like to point out the resources of the LUNGevity website in providing unique information.  For example, here (select the down arrow on EGFR) is some information on the targeted therapy drug you are taking - Tarceva.

I took Tarceva during my fourth line treatment as an adjunct to Taxol and Carboplatin.  Unfortunately, doctors didn't know that Tarceva didn't work on Squamous cell, my type of NSCLC.  So, the drug didn't work for me.  I did know a lady who took it successfully for 10 years and it worked.  So well, in fact, she passed from a sudden heart attack but was well into her eighties.

Look around and ask questions if you care to.  Let us know how your treatments are progressing if you feel comfortable.

Stay the course.

Tom

[ocgal99]

I'm recently diagnosed with nsclc stage IV, adenocarcinoma, EGFR mutation delete exon 19. I'm taking tarceva which is working on me. I'm joining this group to find support and share information. Thank you!

Hi! Glad Tarceva is working for you. May I ask what side effects did you experience? My father also is EGFR and will likely start on it soon.


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[Denzie]

Welcome. You will meet many through Lungevity who experience the same EGFR mutation. They even have a Facebook group- private- for EGFR patients and survivors. You've landed onto one of the most supportive sights anywhere.

Buckeye-wife, are you still in Ohio? Lungevity will be sponsoring a Regional Hope Summit in Columbus. It's an educational and social event. Please consider joining us. I think it's in November. There will be more info on the website.



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[BobbieA]

I'm recently diagnosed with nsclc stage IV, adenocarcinoma, EGFR mutation delete exon 19. I'm taking tarceva which is working on me. I'm joining this group to find support and share information. Thank you!

Welcome. I was diagnosed with the same mutation in December 2015 and have been on Afatinib, also a TKI drug like Tarceva, since then and have felt great. I've hit a bump in the road, progression, and have had some radiation for that. I will be getting a second opinion next week to see if more genetic testing is needed.


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[LaurenH]

Hi, Buckeye_wife,

Welcome to LCSC. We are glad that you have joined this community. Please feel free to browse the discussion boards, read some of the blogs, and join in on the conversations. This is a great place to ask questions. If you are seeking some additional support, I would be happy to share information with you about some of our programs and resources.

Denzie mentioned Columbus HOPE Summit, a one-day survivorship conference which will be held on October 7, featuring expert speakers, educational sessions, and many chances to connect with other survivors, caregivers, and advocates. Please let me know if you'd like more information about this conference. We hope that you will be able to attend!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation