julie-t Posted March 29, 2018 Posted March 29, 2018 My name is Julie, 02/13/18 was diagnosed with stage 4 lung cancer. Finally after all the testing etc.... I am on Tagrisso just a little over a week. So far so good. Last Dr visit latest scan showed 2 ribs, left leg, brain had small cancer spots. I have never smoked and am 58. For weeks I kept thinking they would call me saying sorry we read the test wrong! I joined a few facebook group groups but honestly really freaked me out! I have wonderful family and friends but i need to talk to people who are going through the same thing, because I still can't wrap my brain around it all. But do you ever really? I look forward to making new friends here!
Steff Posted March 29, 2018 Posted March 29, 2018 Hi Julie, Welcome to our club, sorry you have to be a member, but am happy that you found us! You will meet some wonderful folks on this forum. Some who are long-term survivors, some who are newly diagnosed, and some who are caregivers/care advocates (like me). I too turned to this forum to try to wrap my head around my mom's 2nd diagnosis of lung cancer. She was a long time smoker, so we weren't surprised, but it still punched us in the gut none the less, both times. I too attempted at a few facebook groups before I found Lungevity. The support here is unlike no other, encouraging, supportive, and very little doom and gloom. We all share our own portion of expertise, so if you have any questions, please feel free to ask. And feel free to share any of your experiences, we all can learn from you too. I look forward to getting to know you! I moderate the "Just for Fun" forum. We do FUN stuff that helps us to get to know each other beyond the cancer stuff. Feel free to jump on that forum and check out what we have done so far and feel free to add any comments you like. I will be posting a new discussion on Monday that will hopefully add a bit of FUN to our day. Take care, Steff
julie-t Posted March 29, 2018 Author Posted March 29, 2018 thanks! looking forward to some fun stuff!!
LexieCat Posted March 29, 2018 Posted March 29, 2018 Hi, Julie, Welcome! Yup, this is a great group of folks. They have been very helpful during my initial diagnosis/surgery and beyond. I'm fortunate that my cancer was caught early during a screening (former long-time smoker), and I'm hoping the surgery I had will be all the treatment I need. Still, the followup scans can be nerve-wracking, and the very kind and knowledgeable folks here have been very supportive and given me good suggestions. Glad you found us. Teri
Laurel Posted March 29, 2018 Posted March 29, 2018 Welcome Julie- This is a wonderfully supportive group. In September, I was told Stage Ib lung cancer but after my surgery on 2/16, it was staged IIIa. My surgeon and oncologist believe all the cancer was removed, along with the top, right lobe of my lung. Follow up chemo coming soon....just in case. As you have specific questions, guided by what you name the topic, people with the same experience will share. The moderators are wonderful!
Susan Cornett Posted March 29, 2018 Posted March 29, 2018 Hi, Julie. Welcome! We're here for you - questions, venting, whatever you need.
Tom Galli Posted March 29, 2018 Posted March 29, 2018 Welcome Julie! I am so very sorry you qualify for LUNGevity membership. A lung cancer diagnosis is no fun. I spent more than 3 years in active treatment. I've had them all: surgery (actually 3), stent insertions (actually 4), conventional radiation, conventional chemotherapy (18 infusions of Taxol and Carboplatin), targeted therapy (Tarceva), and precision radiation. The important take-away from all this mayhem is I just celebrated fourteen years of survival from lung cancer. More important, if I can live, so can you! Lung cancer is indeed a difficult brain teaser. But, I believe knowledge is power and suggest some reading and reflection to understand the disease and more particularly the treatment you are currently having and future treatments. You didn't tell us the type of lung cancer but your treatment drug -- Tagrisso (Osimertinib) -- suggests you have tumors displaying EGFR mutations (exon 19 deletions or exon 21 substitution deletions). You are receiving a drug that the FDA awarded a Breakthrough Therapy Designation for first-line treatment of EGFR mutation positive non-small cell lung cancer (NSCLC). So you are getting good stuff! Facebook sites are good but comments are short and fast paced. Here, we take time to read and reflect before punching out an answer. You are newly diagnosed. Here is an essay that synthesizes my suggestions for surviving a lung cancer diagnosis. This is indeed a good place for questions and you'll likely have many. Welcome aboard and... Stay the course. Tom
BridgetO Posted March 30, 2018 Posted March 30, 2018 Hi Julie and welcome from me , too. I'm the moderator or this forum and i'm glad to see that so many others have already welcomed you. I agree with them that this is a thoughtful and supportive site. Let us know how we can support you. Bridget O
LaurenH Posted March 30, 2018 Posted March 30, 2018 Hi, Julie, Welcome to LCSC. I'm glad to see that you've already connected with several moderators and members. This site is a great place to find information and resources, ask questions, and find community. Please explore the blogs and discussion boards and feel free to join in on the conversations that resonate with you. And please let me know if you'd like additional information about LUNGevity's Support & Survivorship programs. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
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