Jeanie Posted April 2, 2019 Share Posted April 2, 2019 Hi all. I’m Jeannie, and I’m new to cancer-world and really like the idea of having a place to share information and experiences. I was diagnosed mid-February with Stage IV NSCLC with an EGFR mutation. I had no history, risk factors or symptoms, just a precautionary chest-x-ray. My doc just wanted to know whether my 2-week flu had developed into an infection. Hearing the diagnosis, my wonderful husband and I fell right down the rabbit hole of terror, sadness, dumbfounded ness, and the consuming need to learn absolutely everything we could. Six weeks later we’re still in that mode. But, I’m also on Day 7 of Tagrisso, and I am part of a clinical trial at MD Anderson testing the efficacy of combining Tagrisso with local consolidated therapy (radiation or surgery) compared to Tagrisso alone on my type of cancer. So far, so good. It will be a couple of months before I know if I’ve been randomized into the experimental or control group. Some others on this forum may also be part of the trial. So far, other than riding an emotional roller coaster and exploring every supplemental approach that has made life with cancer easier for others. I’d love to hear from others of who are open to sharing suggestions about what I might learn and do. Nice to meet you!! Link to comment Share on other sites More sharing options...
Curt Posted April 2, 2019 Share Posted April 2, 2019 Hello Jeanie and welcome. I haven’t had to have treatment beyond surgery but I am a fellow EGFR “mutant”. Did they tell you which EGFR mutation you have? There are different ones. A rabbit hole is a good description of what it’s like after diagnosis. Just make sure you are looking up and finding the light outside that hole when you can. There are lots of advancements and lots of hope in the treatment of lung cancer. Link to comment Share on other sites More sharing options...
Steff Posted April 2, 2019 Share Posted April 2, 2019 Hi Jeanie, I'm glad you found us. These forums and LUNGevity's website are a great place to aid in your information-finding mission. There are a few different members with EGFR mutations that are in various stages/types of treatments. I'm sure you will hear from them soon. Take Care, Steff Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 2, 2019 Share Posted April 2, 2019 Hi Jeanie- It’s nice to meet you too. I’m a ALK Positive mutant. I’ve been taking Alectinib (which is in the same drug class as Tagrisso a TKI) for Stage IV NSCLC. Like you I had no known risk factors for lung cancer. The diagnosis came as a complete shock. In fact, the Bonnie J Addario Foundation just posted a white paper reflecting 90% of lung cancer mutants are diagnosed at Stage IV. We are not alone! Hubby & I have been through the emotional roller coaster: now almost seven months later we are settling into the new normal. My symptoms improved immediately after the first dose. I’ve got some of the TKI side effects however I’ve worked with my doctor’s to manage them. All the mutants here have tips on this too. I want you to know eventually the good days will outnumber the bad ones. At some point in the near future your “battle rattle” will kick in. You will be able to enjoy life again. Cancer may have slowed me down but I am determined no to let it break my fun meter! Every day I wake up planning to do something fun. Today is my acupuncture day (like a spa treatment) & I will take me recumbent trike out for a spin. I also participate in an Integrative Oncology Program (aka my hippie protocol). In addition to a number of supplements I receive weekly acupuncture to mitigate the TKI fatigue. We are trying to follow a plant based diet too. Does the clinical trial have any restrictions regarding Integrative Medicine? MD Anderson has a great program. I’d love to learn how you were enrolled in a clinical trial. Ask whatever you want as there’s so much experience in this group. Welcome to our group! Michelle Link to comment Share on other sites More sharing options...
Jeanie Posted April 3, 2019 Author Share Posted April 3, 2019 Thanks, guys. It's so good to meet others and hear about your experiences. My particular EGFR mutation is an exon 19, which may be the most common. I got into the clinical trial during my first visit to MD Anderson, where I went to get a second opinion. I think because I am otherwise so healthy and fit, that I looked like a good subject to the docs. They are very excited about this trial, for good reason I think. It follows up on some very promising studies of combining targeted drug therapy with local consolidated therapy (surgery or radiation) to eradicate any cancer that is left after 12 weeks on Tagrisso. I won't know whether I'm in the "experimental" or "control" group for another 2 months, but I'm hoping to be in the experimental group that gets the most aggressive treatment. I'm on my 9th day on Tagrisso, and so far, I've had no hint of side effects, but I'm holding my breath. I, too, am very eager to use complementary treatments--diet, meditation, cannabis, or ?? MD Anderson's trial doesn't have any restrictions, but just wants to keep track. I'm a 2-hour plan ride away from Anderson, but we have a pretty good integrative treatment center where I live that I have access to. My big goal, like yours Michelle, is to keep being myself and not being defined by this disease. I've never experienced such terror, but I'm determined to make it just part of whatever normal will be from now on. Thanks for any and all advice and encouragement, and I hope to provide the same. Jeannie Link to comment Share on other sites More sharing options...
Curt Posted April 3, 2019 Share Posted April 3, 2019 Jeanie I’m glad to hear you aren’t having any side effects. Finding your “new normal” is a common refrain in this community. I’m also an exon 19 deletion “Mutant”. There are lots of positive advancements. Keep up the positive attitude and living. Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 3, 2019 Share Posted April 3, 2019 Hi Jeanie- So glad you landed in a clinical trial. You’re a smart cookie! So many people do not meet the stringent criteria for entry. I’m treated at Kansas University, a NCI. They have an Integrative Medicine Program where I receive weekly acupuncture. I’m convinced that’s what’s holding off any major depression & keeping the TKI fatigue bearable. I didn’t have any side effects until day 14 then my liver enzymes went bezerk. There was a step down protocol & it’s been fine since. With these TKIs they start everyone off at the same dose regardless of your size & titrate down. So don’t worry if you have any side effects. Communicate everything no matter how small or seemingly insignificant. Some days I feel like a hypochondriac but it’s important for the team to get a full picture. It’s a whole new ball game when you have a chronic disease. I’m going to Gi Gong/Tai Chi this afternoon. I think that helps manage the anxiety. I’m not very good at it due to a life long issue of unccoodination. Doesn’t matter- my balance & reflexives are much better since I started. You might get muscle aches & restorative yoga is great for that. My motto is anything is possible with patience, perseverance & persistence. This isn’t an easy road & thanks to Tagrisso you’ll be able to feel more like yourself with each passing day. Keep us posted on what you’re up to! Michelle Link to comment Share on other sites More sharing options...
LaurenH Posted April 12, 2019 Share Posted April 12, 2019 Hi, Jeanie, Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation. I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations. In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs, a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs. We are here for you! With gratitude, Lauren -- Lauren Humphries Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
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