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I am thankful I found this sight, I am starting my Tagrisso today and got this info in the mail. April of 2018 i was diagnosed with stage 4 nsclc and started on Tarceva, but April 2019 the Tarcev a quit working and it started growing again. I have it in my right lung and it went to both hips. I am very optimistic about this new drug my doctor is giving me, I'm not going to lie, I am worried but I am still thankful that they are always finding something to help cancer patients! I live in Moore Oklahoma, is there anyone out there close to me? I have checked for support groups in OKC area and have never found one.

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Hi Candy,

Welcome to your new set of friends!  I’m an ALK mutant taking Alectinib which is very similar to Tarceva & Tagrisso.  I live with the uncertainty of how long my ride is going to be before I need to switch to a new drug too.  Key word here is LIVE.  

I’m located in the KC Metro.  When I was diagnosed at Stage IV in September, 2018 there were NO support groups for lung cancer survivors.  I am (by ancient history) also a clinical social worker.  I found it so appalling that I started my own group with my awesome team at Kansas University.   With the advances in lung cancer treatment we are now LIVING with a chronic disease.  I wanted a group to help me do that.  

As an adopted mid-westerner, I sorta consider OKC in my backyard.  Before I was diagnosed, I was a competitive rower making a few trips a year down to OKC Riversport.  You’re more than welcome to come up to our group which is listed at www.turningpointkc.org   (Last page of the calendar).  We meet the second Friday of each month.   There is also a free restorative yoga class (see page 7 of the calendar) immediately following .  The social worker who manages our group is a ROCK STAR.    We are just getting off the ground now with 5 members, two people are EGFR mutants.   KC might be a haul- however we did the drive to OKC for a 4 minute race.  🤪

If KC is too far, then I could also recommend Facebook, they have a robust EGFR community on line.  

There’s a number of EGFR peeps in this forum as well.  

This is a wonderful community where the Beatles “with a little help from my friends” brings on a whole new meaning! 

Michelle

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Hi Candi an welcome. I'm glad you found us. I live in Portland Oregon and haven't found a support group here, either.  I rely on this site a lot for info and support. It's a great group!

Bridget O

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Hi Candi,
I also want to welcome you to the site.  I don't live near you, but I can tell you that there are a lot of supportive people here and while I'm six days away from a probable lobectomy, they have helped me greatly with their knowledge, support and prayers.  I hope you do find a local group, but also that you'll find this group a place to come to share and receive support from some pretty nice folks.  Hopefully I'll have more to offer as I progress on my own journey.
Lou

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Hi Candy, I'm italian and live in Roma, my mother (age 73) is in Tarceva 100mg from 6 dicember; she is EGFR+esone 21 with pleural mets...kisses to every One

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Hi Candy and welcome.  I’m also an EGFR mutant.  Currently NED after a lobectomy.  This group is a great place to find support.  I did a google search and found a support service in OKC through the Integris Health Care System.  I don’t know anything about Integris or this particular group but it may be worth a shot.  Contact info is below   Here is a link https://integrisok.com/locations/specialty-clinic/troy-and-dollie-smith-wellness-center/services/patient-and-support-groups

Lung Cancer Survivors and Caregivers Network

Pam Billings, 
405-748-4674 or 405-414-6907 
Meets the second Monday of each month at various location 

 

I also, thanks to @Rower Michelle,  find the Bonnie Addario Foundation Living Room sessions helpful.  They can be watched online.  The next one is the end of May https://www.lungcancerfoundation.org/patients/support/   

 

 

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Hi Candy, I live in Tulsa Ok.  I have not been diagnosed with LC but I have a nodule  that is being monitored.  I found this site in December and I was a scared terrified wreck and the people on here are so wonderful they make you feel as though you are not alone.  If you are ever in Tulsa you can message me and I would love to have a coffee with you.  Love & Light ❤️

Lisa

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HI Candy,  How are your treatments going?  
You can also call our lung cancer helpline- 844-360-5864

We can provide local as well as national resources for you and any information on financial assistance.  
I look forward to reading an update from you soon.

 

 

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