Juliecroe Posted July 11, 2016 Share Posted July 11, 2016 Hello, I am a 47 year old mom to 3 teenagers and was just diagnosed with stage 4 adenocarcinoma lung cancer that has metastasized to my liver. I have a golf ball size lesion in my right upper lung lobe, pls one 6x6x4 cm lesion on top of my liver pushing up against my diaphragm, pls three smaller liver lesions. I tested positive for the EJFR mutation & my doctor has started the process of approving me for Erlotinib. My family & I are scared, as I keep seeing the 15% 5 year survival number. Any help & encouragement out there? Any experience with that drug & the longevity of its effectiveness? Juliecroe 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 12, 2016 Share Posted July 12, 2016 Julie, It is hard not to be mindful of survival statistics. When I got my news, 12 years ago, I was undone and stayed that way until I read an essay by Stephen J. Gould called The Median is Not the Message. Here is an audio version of the essay that gave me so much solace: http://www.youtube.com/watch?v=cH6XuiOBbkc At this point in time, it is best to focus on your treatment. You are young, have a form of lung cancer that responds to targeted therapy, and have a loving family to assist you during treatment. Like Gould, I believe one's attitude toward treatment and outcomes is vital to success. Proof? I'm alive. If I can live, so can you. Here is some information about adenocarcinoma and EJFR targeted therapy that may be helpful: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy My chemotherapy was taxol and carboplatin. During my third line treatment, my doctor added the newly approved Erlotinib or Tarceva but in those early days before genetic tumor testing, doctors didn't understand how or why it worked. I have squamous cell carcinoma and we now know Tarceva is ineffective for squamous cell. But I know a woman who survived (she did more than survive, she thrived) 10 years taking Tarceva and in fact, she passed away with a heart attack. So it is effective. It can arrest your cancer. Try and let this bad news settle in. You'll have many questions and we are here for you. Stay the course. Tom LaurenH 1 Quote Link to comment Share on other sites More sharing options...
Juliecroe Posted July 12, 2016 Author Share Posted July 12, 2016 Tom, you are a blessing to me. I am a rational, intellectual type and this information is exactly what I needed today. I am waiting for approval on my erlotinib but not standing still. I am using my waiting time to do a bunch of alternative immune-building therapies to hopefully work in conjunction with the erlotinib. I have read Gould but didn't know his story on this; I love it. I have read Gould as an amateur Christian apologist learning the "other" side. God has given much wisdom to many. The thing perhaps that makes me smile is Gould's inability to define that strong willed spirit. As a Christian I am blessed to define it easily as the action of Holy Spirit, God's image or "soul" in me. I took enough statistics classes to know what Gould defined but needed to be reminded; I am blessed to understand the spiritual he cannot define. I will be sharing this video. Thank you, Tom, for blessing me today. I am asking God's greatest blessings to you this day as you bless all of us. Julie RuthieThomas, LaurenH, Clarinet bob and 1 other 4 Quote Link to comment Share on other sites More sharing options...
marc9338 Posted July 14, 2016 Share Posted July 14, 2016 Julie, Thanks for joining/sharing. I was diagnosed with stage 4 about 6 weeks ago. I tested positive for ALK mutation and began targeted therapy the end of last week. I feel great... the fight is on... I love your attitude and your faith... Our God is BIG and MIGHTY and I have been on fire since day 1. I would encourage you to read the book of Mark. On the spiritual front, one thing I noticed in Jesus's teaching was... many of the people Jesus healed, he would say "your faith healed you". I believe our faith (attitude) is an equal factor in our cure. Keep the faith... Also, I love your reference of the Holy Spirit. Romans 8:26 "the Holy Spirit helps us in our weakness. For we don't know what to pray for as we ought, but the Holy Spirit prays for us with groaning that cannot be expressed in words". I heard this, this week. The Holy Spirit lives in you as a Christian and know the Holy Spirit is interceding on your behalf. Pretty awesome stuff... I will be praying for you and your family. Keep your head up and take focused on the end goal... Marc Quote Link to comment Share on other sites More sharing options...
Juliecroe Posted July 14, 2016 Author Share Posted July 14, 2016 Thanks, Marc! You will be in my family's prayers as we ask Him to guide our choices & the physicians' clarity in guiding us. What state are you in, if you don't mind my asking? Quote Link to comment Share on other sites More sharing options...
marc9338 Posted July 15, 2016 Share Posted July 15, 2016 I am in Dallas, TX. Thank you for your prayers. Quote Link to comment Share on other sites More sharing options...
marc9338 Posted July 18, 2016 Share Posted July 18, 2016 Julie, Checking in... How are you doing/feeling? Hope you are getting things figured out and on a path forward. Let me know if I can do anything for you. I am praying for you and your family... Marc Quote Link to comment Share on other sites More sharing options...
Juliecroe Posted July 20, 2016 Author Share Posted July 20, 2016 Hi Marc, I am feeling fine. Currently in Mexico doing some alternative therapies while waiting 4 approval 4 parceva. Doctors want me to get a PET scan right away, even tho the yreatment plan wouldn't change. I am a little frustrated by this. So much radiation in such short time. How are your spirits? Any new news for you? Are you feeling ok? Quote Link to comment Share on other sites More sharing options...
marc9338 Posted July 20, 2016 Share Posted July 20, 2016 Julie, Good to hear from you. I am feeling great actually. I've been on oral chemo for 1.5 weeks now and expecting good results. Glad you were able to get in to some alternative therapies so quickly while you wait. Waiting is absolutely the most frustrating part, especially when you feel/know time isn't on your side. I am very interested in your alternative treatments and would like to hear more about what they are and outcomes. Keep me posted. Praying for you... Marc Juliecroe 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted July 20, 2016 Share Posted July 20, 2016 Julie, Any news on the timing of the start of your treatment? Stay the course. Tom Juliecroe 1 Quote Link to comment Share on other sites More sharing options...
Juliecroe Posted August 10, 2016 Author Share Posted August 10, 2016 Greetings Tom & Marc, just wanted to provide a quick update, & get an update from Marc. I spent 3 days in the hospital for blood clots in the lungs, but am back to work feeling fine. Tarceva is going fine so far, but now I am also on blood thinner Xrelto to keep blood clots from forming. I unfortunately did find out I also have 2 small cancer spots in brain, so it is likely somewhere in bones too. PET scan later. Planning on 2nd opinion to MD Anderson in September I think. Marc, hope your treatment is going well. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted August 10, 2016 Share Posted August 10, 2016 Julie, Ouch! Okay. Pick yourself up and dust-off and give Tarceva some time. I understand the concern about radiation and scans but undetected cancer is so much more dangerous. Doctors need to understand where it is. For example if it is in your bones, you may be put on several courses of Zometa to strengthen your bones. Zometa does not attack the cancer but kick-starts the process of allowing bones to repair cancer caused damage (at least that's the way this civil engineer understands its function). MD Anderson is a good place. Since you are a distant consultation, ensure you have all the administrative "Ps and Qs" ironed out before you arrive there. I've heard about some unpleasant experiences from folks who arrived for a distance consultation and didn't have this or that form completed. And, as you probably know by now, most of those forms have to do with payment. Chin-up! Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
Tylalla Posted August 10, 2016 Share Posted August 10, 2016 Hello Julie, I was also diagnosed with stage IV metastatic lung cancer. Mine is Squamous cell. It's a recurrent cancer that spread from the original site of my left lung. After failed chemo therapy (due to worsening neuropathy), and failed Opdivo, I was put on Tarceva. (I received gene testing as a result of switching to a different oncologist and it was determined that I had the EGFR+ mutation even though I had squamous cell cancer which is the reason I was put on Tarceva.) After 5 days I started getting the rash that usually accompanies the drug. My rash became severe so I'm currently off the drug until it heals and then I will start again on a lower dose. I'm really hoping the Tarceva works well. I'm also getting an Xgevia shot to help my pelvic bone regenerate (I have a pelvic bone tumor). How is the Tarceva working for you? I wish you the very best and hope your treatments work well for you. Quote Link to comment Share on other sites More sharing options...
marc9338 Posted August 11, 2016 Share Posted August 11, 2016 Julie, Great to hear from you... However, sorry about the hurdles you've had. Sounds like things are getting back on track, which is great. I am finishing my 4th week of Crizotinib for ALK mutation and feeling good. I was at MD Anderson today for a second opinion. The MDA Onc felt my local Onc was doing all the right things. The only recommendation was to have a brain MRI to insure no brain mets. He didn't feel like there were any, but wanted to rule out completely. Continuing to be positive and look towards the future. I have met A LOT of people who are doing really well on targeted therapy. I think EGFR+, ALK and ROS1 patients we are going to start seeing the stats change (get better) as more and more people are treated with the new med options and as time continues to pass. Let me know if there is anything I can do for you... Praying for you... Marc Quote Link to comment Share on other sites More sharing options...
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