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Hello, introducing myself


JulieG

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Hi everyone,

After lurking around the site for a couple of months reading posts, I decided to join and become official. I was diagnosed with NSCLC, Stage 4, in November of 2016. The cancer was initially found in my bones, after I finally saw my doctor about pain in my left hip radiating down my leg. I'm nearly sixty, and it felt a lot like sciatica which I had experienced a couple of times in the past, so it took me a couple of months to speak to my doctor about it. Blood work led to a bone scan, and then all heck broke loose. My family doctor quickly referred me to an oncologist, who ordered CT scans and MRIs to find the origin of the cancer. At about that same time, I had begun experiencing shortness of breath, which became quite bad by the time of my chest CT scan. That revealed my left lung was filled with fluid and partially collapsed. I had the first of several thoracentesis procedures, and the fluid was malignant. I started chemo (alimta and carboplatin) the week before Thanksgiving and had four cycles. Before the 2nd cycle, we learned I had the EGFR mutation. My oncologist felt it was better that I complete the course of chemo rather than switch, since I was tolerating the chemo very well. I started Tarceva at the end of February of this year. I just had my first set of scans last week since starting Tarceva, and will learn the results tomorrow. I'm a bit anxious, but hopeful that the Tarceva has been working. I've had very mild side effects with that as well. I'm married (my husband has been my rock since this all began) and have two sons in their 20s (telling my sons was the hardest thing I've ever done). I'm actually feeling good, so I've been able to maintain my normal routine, go to work go walking, yard work, cook, shop, clean the house, etc., etc. which has helped my sons see that I'm not imminently dying. I know the realities of this disease and the long-term iimplications, but I'm determined to make the very best of things especially while I feel good. Although I was a little reluctant to really delve into researching treatments and such at first, I'm now ready to learn more about the EGFR mutation and what some other options will be for treatment when Tarceva stops working. I also meant to mention, in early December I had a VATS talc pleurodesis on my left lung, which effectively stopped the constant accumulation of fluid. I still have some numbness and occasional discomfort around my lower ribcage as a result, but it sure beats a weekly thoracentesis. Getting a cancer diagnosis is sure a kick in the gut, but i'm up for the fight (and if it had to happen to anyone in my family I'd rather it be me instead of my husband or, heaven forbid, one of my kids). I'm looking forward to learning more from the rest of you who are also on this journey.

Julie 

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Julie,

It is official, we've joined you in your fight.

I had Tarceva in 2005 before doctors knew it only worked with certain forms of adenocarcinoma non small lung cancer (NSCLC) and your EGFR mutation is the form it attacks.  My Tarceva was administered in conjunction with Taxol and Carboplatin, but Tarceva didn't work for me because I had Squamous cell NSCLC.  I can recall my oncologist telling me the horrible skin rash (the world's worst case of head and neck acne) was an indicator that Tarceva might work.  We laugh about the Tarceva stories today when I seem him twice a year.  But, I know a lady who took Tarceva for 10 years and it worked -- completely and effectively.  It controlled her lung cancer but she passed away several years ago from a heart attack.  So Tarceva works.  Conventional chemo therapy works.  If it didn't, I wouldn't be writing this.

You asked about learning more about the EGFR mutation.  Here is some basic information. Click on the down arrow by the EGFR (epidermal growth factor receptor).  After you read this basic information, here, here and here are more focused papers on EGFR, but they will take some time to digest.

Are you a Facebook devotee?  If so, LUNGevity has a dedicated Facebook site that is exclusively devoted to EGFR Targeted Therapy.  In the Facebook Search Bar, type lungevity egfr group, and hit the join tab in the upper right hand of the first box. There may be a short delay while the administrator approves your entry but it is a closed group populated exclusively by folks with EGFR mutations.  They are an amazing group.  But, if you are not Facebook prone, no problem.  We can answer your questions.

I'm glad you are actually feeling good and I'm extra glad you are engaging in activities you enjoy while in treatment.  You will likely be taking Tarceva everyday and that will be for years and years and years.  I believe that when one chooses treatment, one chooses life and it is important to enjoy every moment.  Good for you!

Stay the course.

Tom

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Julie,

Tom has provided a wealth of resources and support regarding the EGFR mutation. I tested negative for it, so my limited knowledge of it is limited. I have encountered many other patients who have been on Tarceva for a very long time, and I'm hearing about other targeted therapies in development and trials. What I CAN empathize with is being diagnosed with stage IV NSCLC adenocarcinoma. It is so overwhelming, even being seven months into the process. I totally understand the anxiety you must be feeling this evening about your scan tomorrow. When will you get results? Now that all your diagnostic tests and procedures are complete and you have a treatment plan, hopefully you will continue to live your life the way you always have without having to devote much time, attention of discomfort from side effects to your cancer. It will be natural for you to anticipate the periodic scans with anxiety because that's the one moment, the results of which, so much depend. So, I'll be thinking of you and looking forward to your sharing your news in the coming days. Thank you for sharing your story with us.

Cindy

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Thank you so much for the welcome and for those links, Tom. It has taken me months to get to a point where I could actually read about lung cancer without nearly having heart palpitations. Honestly, I'd start reading some of the grim statistics and just couldn't read any more. I'm past that, and am eager to learn more about the EGFR mutation. I know it will take me a while to get through those and digest the info. 

Cindy, my scans were last week and I saw my oncologist today for the results. Unfortunately, they were not as good as hoped. Although my CT scan shows everything stayed the same, the bone scan showed new mets at my right hip area (where I'd been having some pain, so I wasn't shocked at all), and my sternum. My doctor offered a couple of options, which were to wait and do another bone scan in a few weeks to see what those new mets look like (I also get Zometa infusions every 3 months, so the bone activity could be the bones healing themselves, but because these are new, more likely they're cancer), or switch to another drug. He favored having me switch to Tagrisso, so once insurance gives its blessing, and all that, I'll be on that. We talked about the fact that I had very mild side effects and whether that is an indicator of how effective it is. Fingers crossed I have better results. My doctor really wanted to see an improvement, not just keep things in check or progression. So, obviously that's disappointing, but my doctor wasn't all doom and gloom so I take that as a hopeful sign. At least I wasn't told there are no other options. Going back to typical chemo could be done too, but with the mutation he'd rather I keep trying other targeted therapies. 

So, the fight continues. 

Julie

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I also meant to add, I joined the EGFR and Targeted Therapy groups on Facebook. Great people there as well as here, and it's so good to interact with people who "get it". I get tremendous support from my family and friends, they are blessings to me. But only another cancer patient can completely understand.  

Julie

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