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I am now on disability, fighting my cancer is a full-time job. In my past life I was the Business Development Manager for a technology company in Rohnert Park, CA. When not doing advocacy work you can usually find me in a spin class or out in Mother Nature hiking or biking with my friends. I was dx with Stage 4 Lung Cancer in June of 2009. Since then I have done radiation, six cycles of chemotherapy Taxol, Carbo and Avastin for the lung cancer. That was followed by six cycles of Genzar for metastases to my liver. In March of 2010 because I was non-small cell adenocarcinoma I was given a targeted therapy (Tarceva) to try. At that time it was less expensive to try the medication and see if it worked than sending the tissue out for testing, Tarceva kept me stable for over six years. During those years I was given x-rays and CT scans that showed no change in the tumors in my lungs, so it was thought that since the Tarceva was working so well I had the EGFR mutation. As I became more aware of genomic sequencing and knew my tissue had been saved I requested that it be tested for the basic mutations EGFR, ALK, after checking I was told there was not enough tissue for testing. That was also about the time I realized Tarceva wasn’t going to work forever and I probably needed a plan B. Having more knowledge about genomic sequencing I knew high on that list should be a new biopsy to have my tumor tested. In November of 2015 I was working on my friend Tim’s ranch and after a long day of shoveling decomposed granite I notice when Tim and I retired for the night my left leg was swollen. I post everything on social media, so when I posted a picture of my leg I received more than one suggestion it might be a blood clot and I should have it scanned. That scan triggered my Oncologist to order a CT scan the following week and that scan revealed a 1.2 CM tumor in my left lung. This is when my plan B kicked in. Before requesting a needle biopsy of the tumor I wanted conformation the cancer hadn’t metastasized to any other location. So first I requested a PET scan, followed by a bone scan and a brain MRI. It was an all-clear, so now I knew it was only the new ½ inch tumor in my left lung I had to confront. In December of 2015 I had a needle biopsy performed. I asked to speak to the surgeon performing the procedure. He came in as I was being hooked up with an IV. I stated to him that when he was in there snapping away to please don’t be polite, take as much as you like. He shared with me he was just given the request for the biopsy and didn’t know my story. I explained the tissue was going to be for genomic sequencing and I needed as much tissue as possible. After the procedure he came into recovery room with a big smile and shared that I would be proud of him. I knew from my research genomic sequencing takes a larger sample so didn’t want to go back for a second procedure. I post my entire cancer journey on social media and have connected with doctors, scientist, nurses and bloggers, also concerned friends and family that all care about my wellbeing. So I know if I post my treatment plans I will hear from someone if I am off track. I posted about my tissue biopsy and I received a private message from my friend Bonnie J. Addario the founder of the Bonnie J. Addario Lung Cancer Foundation, she asked if I was sending the tissue to Foundation Medicine? I said I didn’t think my healthcare provider would cover the cost. She gave me a person to contact and within a couple of days my tumor was on the way for testing. Foundation Medicine said they would bill my insurance and if there was an issue I could apply for financial assistance, but my wellbeing was there first priority. I had the results within two weeks of Foundation Medicine receiving my tissue sample. I was very impressed with the report, over 24 pages. It discussed my alterations and statics about my alterations, and even ones that I had expression for that did not yet have treatment protocols. The report also listed FDA approved treatments for my alterations and all the clinical trials that were available. Since my girlfriend Penny Blume passed in 2014 from small cell lung cancer I have dedicated myself to advocating for lung cancer research and awareness. I became a Consumer Reviewer for the Department of Defense Lung Cancer Research Program in 2013 and advocate for Lung Cancer groups like the Lungevity Foundation, Team Draft and involved with Lungevity Foundation Lifeline support program which is one on one support for newly diagnosed patients. My connections with these groups have put me in touch with some of the top doctors, researchers and advocates in the lung cancer community. With my Foundation One report in hand I set out to look for a second opinion. I was shocked to find out after being stable on Tarceva for six years I had none of the common mutations, including EGFR. What showed up on the Foundation One report was NTRK1 without fusion and PIK3CA. I was able to connect with Dr. Jeffery Engelman at Mass General Hospital for a second opinion. Dr. Engelman reviewed my reports and agreed with my decision that Opdivo (Nivolumab) was my next best option; I am now on my eighteenth infusion and feeling great and again have stable disease. When I was diagnosed in 2009 with stage 4 non-small cell lung cancer I was given 8-12 months to live. It is because of precision medicine that I am still writing my story almost eight years later, and still mountain biking and enjoying life to the fullest. Penny never had the opportunity to benefit from precision medicine or treatments like immunotherapy. Penny passed on 1-21-2014 at my home in California surrounded by her family. My last promise to Penny was I would continue to advocate for lung cancer research and awareness. This opportunity to share our story helps me keep that promise to her, so I thank you. Be well, Don Stranathan Stage 4 Lung Cancer Survivor
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I don't know about the rest of you, but my costume for this year is LUNG CANCER SURVIVOR! I'm planning to wear this same costume (which consists of a big smile, an appreciation for my medical team, and a great attitude) for years to come. Enjoy your day!
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Good morning! As many of you know, November is lung cancer awareness month. It comes on the heels of pink October and the popular fight for breast cancer. Thanks to Lungevity, I have some statistics and flyers that I'm providing this month. I'm also sharing stats each day on my Facebook, Instagram and Twitter account. I might have accosted a stranger or two in the elevator or Starbucks line. My friends may go for a restraining order by the end of the month, but I firmly believe that God brought me this far to be an advocate for those who have gone before me. If you have any media or celebrity contacts, reach out to them. We need to open eyes to the fact that lung cancer is EVERYONE'S concern and needs funding and research. Thanks to all of you who have read my posts, shared your stories and helped me walk through this minefield of a cancer diagnosis. Without this forum, I don't know where I'd be today. I pray for all of us every day.
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Are you a lung cancer survivor? Please participate in this 5-10 minute anonymous survey, and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community. https://www.surveymonkey.com/r/R25QHD7
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I finished my chemo last Friday and got to ring the bell! But now the hardest part starts for me - waiting for the first post-treatment CT scheduled for July 1st. I'm an anxious person on a good day, so I would love to hear how any of you survive the period between scans. My wonderful oncologist said that if the CT is clear, I won't have to have another one for 6 months.
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Join us for the next Caregiver Twitter Chat: Topic: How Can Lung Cancer Caregivers Communicate with the Healthcare Team? Date: Wednesday July 6, 2016 Time: 5pm Pacific/7pm Central/8pm Eastern This chat is open to ALL lung cancer caregivers, patients, survivors, and professionals. Are you a patient seeking help for your caregiver? This chat is for you too. Twitter Chat tips: A great online tool for Twitter chat participation is http://www.tchat.io/ Just log into your Twitter account from this site and then enter our chat hashtag #LCChat. You'll be able to follow right along and read everyone's tweets, retweets, likes, and replies!
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June 7th is Cancer Survivor Beauty and Support Day™ (CSBSD™) a nationwide event that takes place every year on the first Tuesday in June. It is a day of volunteering when those in the beauty and related industries in all fifty states offer complimentary services to all men, women and children cancer survivors, regardless of their type of cancer or when they were diagnosed. All cancer survivors are invited to participate and, for many CSBSD™ is the only time during the year that they receive a little personal kindness, warm support and tender pampering. Visit the website and click on the link of participating sites listed by state. http://www.cancersurvivorbeautyandsupportday.org/ If you don't see a location near you contact Barbara Pageat at [email protected]<script data-cfhash='f9e31' type="text/javascript">/* */</script>
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Watch 10 year lung cancer survivor, Linnea, talk about clinical trials https://www.youtube.com/watch?v=FKEW1CZbt4w -
If you are on the west coast- you can come out and support the Hearty Girls as they raise awareness about #lungcancer by riding to The Ellen DeGeneres Show http://www.lungevity.org/support-survivorship/get-connected/blog/ride-to-ellen The Ride to Ellen Print this page Posted on August 27, 2015 - 10:20am Michelle Andersen “We’re riding to The Ellen Show!" Why? That’s a good question. How did I, a retired special education teacher of 38 years, end up planning an extended trip, with bike rides, via motor home from Seattle to Los Angeles? Strangely enough, it started with a diagnosis of incurable, neuroendocrine, non-small cell lung cancer, Stage IV, given to me on 11/11/11. Well, the bike ride plan didn’t start then, but the desire to live life to the fullest, combined with a desire to make a difference, definitely started that day. To hear that diagnosis … to someone who never smoked… and lived a darn healthy life … was devastating. No more had I heard the news from the oncologist, when the nurse arrived with my chemo schedule and a wig catalog since I would be losing my hair. And, plenty of anti-nausea medication. And, anti-anxiety pills (though I never had any anxiety). And, supplements to keep my blood levels somewhat normal so they can be destroyed along with the bad stuff. The prognosis: 3 to 5 years. So, my journey began. Various rounds of chemotherapy. An argument won to receive radiation. Cancer moving to my lymphnodes. A different chemotherapy. A study drug. Yes! A study drug- combined with a traditional chemo that reduced the cancer significantly. Low platelets. Off the study drug. On another chemo for 15 months now. Almost to my 4-year anniversary. Throughout this journey, my husband and my family have been beside me every step of the way. They are loving, positive, encouraging, understanding and strong. My friends have been pillars of strength, humor and encouragement. My oncologist and all the folks at Seattle Cancer Care Alliance have treated me with the utmost care and concern. They are my cornerstones when I am looking for hope. And, God never ceases to amaze me with his graces. So. indeed, I am the recipient of many blessings. And during all this, what could be better than two college buds, Kathy Oliver and Judy Pouley, visiting me regularly and inventing new schemes and ideas such as the Flash Mob and a Ride to Ellen? The Hearty Girls were now ready to make a difference! The Hearty Girls came together to create common goals: To influence the thinking of millions who believe that cancer is self-induced by smoking (1 in every 15 Americans will be diagnosed with lung cancer this year and of those, over 50% are non-smokers) ; to increase awareness about lung cancer (lung cancer kills more people than all the other major cancers combined); and to raise funds for lung cancer research (of all the federal funds given to cancer research, lung cancer receives only 6%!). These were all shocking facts. And I can tell you that, having been a recipient of a study drug, I know first hand the benefits of research. The Hearty Girls had to spread the word … but how? Through media, of course! And who would be our messenger? Ellen! Of course. We would ride there. Sort of! We met first with the folks at Seattle Cancer Care Alliance who put us in touch with some lung cancer foundations. LUNGevity was one group who seemed to fit our criteria: a group dedicated to raising funds for only lung cancer research. We shared our idea of a combined road rally and short bike rides along the I-5 corridor with our final destination to be the Ellen Degeneres Show where we could share our story. LUNGevity became our beneficiary and partner in planning the ride. We will leave Seattle on Thursday, September 17. Our stops include: Portland, OR, Eugene, OR, Ashland, OR, San Francisco, CA and Paso Robbles, CA. We plan to arrive at the Ellen Show on Monday, September 21. Each stop will include a 20-minute rally, media and a short bike ride. Each event will be videotaped and sent to Ellen via Facebook, Twitter and Instagram. We are getting closer, Ellen. Get ready! We have only heard from the folks at Ellen’s Show one time. Their comment, “We tell people they have a one in a million chance of getting on the Ellen Show. We don’t want to get your hopes up, but you might be hearing back from us.” We cancer survivors and fighters are used to this kind of message. We don’t always get our hopes up, but we are thrilled when someone gets back to us with good news. And I can tell you this: having the chance to work on a project such as this boosts my spirit and lessens the burden of all that goes with lung cancer. We might have a one in a million chance of meeting Ellen, but it’s worth the effort to have a chance to share our story and help make a difference. We would love to have you all join us for some or all of the ride. If you are near one of the cities we are visiting, please come out and support us and LUNGevity. Tell others about it. Visit us on Facebook: The Hearty Girls-Ride to Ellen. Follow us on Twitter and Instagram. Our complete itinerary will be posted on the LUNGevity website. Please tell your friends and join us in ending the myths of lung cancer and raise some funds for research! We need you! Thanks! Michelle Follow Michelle Anderson and the Hearty Girls on Facebook and watch their news coverage on KING (Photo: KING) Ride to Ellen schedule and rally information.
