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  1. I had a pet scan yesterday as a follow-up to my CT in February. As suspected, a lymph node near the aortic arch lit up. But nothing else lit up so that's reason enough to do a happy dance. I'll have a surgical biopsy to confirm it is adeno (same as primary tumor removed last year) and I will have a port put in. I have 6-7 weeks of concurrent chemo (carboplatin and taxol) and radiation and I am not about to endure that without a port. Doc will also send me for an MRI just to confirm the brain is still clear. Doc knows I have a trip planned for Hawaii at the end of May so he's trying to get this started so I can finish in time to take my trip. I will probably feel pretty crappy by then, but I'd rather feel crappy sitting on a beach. I was a little sad on Saturday - I presumed the misbehaving lymph node was cancer. I was a little sad today and then mad, but now? Let's get this fight started. I've already had 13 months since my initial diagnosis and that's pretty damn good. I'm ready.
  2. We met with my oncologist yesterday to discuss the recurrence of NSCLC in my right supraclavicular lymph node. The thoracic surgeon who performed my lobectomy agreed to perform this surgery, and I'm scheduled to consult with him on March 9th. The results are back on the tumor testing. It tested positive for ALK. The oncologist talked a bit about the drug crizotinib as a possible future treatment.
  3. One year ago today, I was diagnosed with late stage lung cancer following a lobectomy of my upper left lung. The rest of 2016 brought chemo, a second surgery, a second cancer diagnosis, and enough anxiety to power a small city. But all that matters is I AM ALIVE TODAY. There are so many cancer patients who don't make it this far and I will not take this for granted. I have three trips planned this year and get to see my precious niece marry the love of her life in a couple of months. Now I just have to get through tomorrow's scan results.
  4. Susan Cornett

    Mantra

    We've all experienced that sucker punch to the gut when we, or a loved one, are diagnosed. But several physicians have told me and others on this forum that a positive attitude is so important in this fight. There are so many wonderful survivors on this forum that gave me, and continue to give me, hope. I read this today and think it applies to all of us on this forum: Don't die before you are dead. So, I move on with life and have decided not to die before I'm dead. Cancer be damned - I'm going to Hawaii in 4 months.
  5. According to my profile, it seems I joined the forum in April 2016 and then promptly forgot about it. As I was trying to register yesterday it said my email was already in use so knew I must have already joined. Finally was able to change my password so I'm back. I'm a 77 year old female dx with Stage 4 NSCLC in December 2015. I live in a small town in northern Michigan with my husband of 58 years. We have two children and two grandchildren.
  6. Nothing can prepare a man and his family for a lung cancer diagnosis. I remember the night five years ago when my mom called me with bad news. My uncle, Keith, had just been diagnosed with Stage IV lung cancer. Keith is my dad’s youngest brother, who is always making everyone laugh and giving the best bear hugs. He is a husband, father, and small business owner who coached all of his kids’ youth sports teams and never missed a game. My grandfather passed away from paranasal sinus cancer when Keith was seven, so he grew up without really knowing his dad. Because of that experience, Keith is determined to never leave an empty seat at an important family event. The night we found out that our beloved uncle had lung cancer, my sister and I cried together and hugged each other for a long time. We started asking questions like, “How did this happen?” and “Why him?” and “What does this mean?” Then we realized there was only one question we could actually attempt to answer: “What do we do about it?” My mom was at our local farmer’s market when by chance, she met Cindy, the founder of Breathe Deep Baltimore, one of LUNGevity’s grassroots events. Cindy started the Breathe Deep Baltimore walk in 2008 in loving memory of her mom. The event was taking place in Oriole Park at Camden Yards. Monica Barlow, the Orioles’ former PR Director who had the same ALK-positive lung cancer as my uncle, was the keynote speaker. We had to be there. Our first Breathe Deep walk as a family was hopeful and somber as we celebrated survivors and honored those we’ve lost to this terrible disease. Monica spoke about the groundbreaking research that LUNGevity was funding and how important it is to be strong advocates. That was the first time that my uncle met other lung cancer survivors. Until that day, he didn’t have anyone to talk to who understood what he was going through. Breathe Deep Baltimore felt like my family was part of an important movement, and that we were accomplishing something together that was much bigger than what any one of us could have done alone. I had just finished grad school and all of my work and volunteer experience was in marketing and event management, including positions with Susan G. Komen and American Cancer Society. I decided to join the Breathe Deep Baltimore committee and help plan future events. I had no idea then that this group of wonderful people would become like family to me. This September marked my uncle’s fifth year as a survivor, a milestone we celebrated as a family. His first year of treatment included chemotherapy, radiation, and surgeries. He took Xalkori, a targeted therapy drug, for three and a half years and recently switched to Alectinib, both with very positive results. This September also marked my fifth year on the Breathe Deep Baltimore committee and my second year as a LUNGevity employee. Working for LUNGevity, first as a volunteer and now as a full-time staff member, is incredibly rewarding. As the Digital Community Manager, I interact all day on social media and our online communities with patients, survivors, caregivers, and advocates. I am incredibly thankful for the people who are working to create a world where people with lung cancer live longer and better because of early detection and more effective treatments. I am grateful for the opportunity to know and work with these people and to help support others whose lives have been affected by lung cancer. By working together, I am determined and optimistic that we can stop lung cancer. There are always an infinite number of reasons to be hopeful.
  7. 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
  8. Hi all, I am was dx in March 2016 with Non small Cell Lung Cancer, Stage IV. I had a pleural effusion on my lung, bone mets on brain, spine and pelvis. Started Tarceva in April and Cyberknife radiation to my brain and spine. Most of the tumors have disappeared or shrunk by 70%. Meanwhile, an abnormal lymph node has shown up in my last PET scan and continues to grow a fraction of a cm. It was on the original PET scan but because lung cancer is more life threatening, my oncologist did not worry about it. In 2005, I had Large B Cell Lymphoma, Stage IV. After 6 rounds of CHOP and rituxan, I was in remission and stayed that way for over 10 years. I belong to a group called Inspire and really love it. Just recently, I found out about this group. If there is anyone out there with my similar lung/lymphoma cancers, it would be great to hear from you. Most days I feel great, lead a normal life and feel grateful for the advances in cancer treatments. Anna
  9. Hi Everyone, I had a follow up with my oncologist yesterday to review a CT scan I had done last week. He told me I was "disease free" (his words) and I asked him to repeat himself, because it was the first time a medical provider had used such simple terminology to give me an update since my original diagnosis of Stage IB Muscinous Adenocarcinoma in July 2016. I will have another CT scan in November and should have the results from my gene sequencing then as well. Everything has happened so fast for me, from my diagnosis to my surgery, to my recovery, that it all feels like a whirlwind and I am trying to get my footing in place too. These last few months have been difficult at times, and I am glad I had you all to help me through this process. Thank you all! My journey in this life is far from over and I look forward to reading all your updates. ~Yovana
  10. I've just been diagnosed with andenocarcinoma of the lung. I got all the results on Friday from the PET-CT, Brain MRI, EBUS, etc... It APPEARS to be stage 1, localized to the lower lobe of the left lung. So I'm lucky. However, there is a second, smaller spot on the upper lobe of the left lung. They won't know if it's cancer until they do surgery to remove the first tumor. And the Brain MRI showed what they believe is a meningioma, but again, can't know for certain that it's not related to the lung cancer. I have an appointment pending with the neurologist who, according to the oncologist, will likely repeat the MRI in six weeks and keep monitoring it. I now have to decide where I want the surgery done. I didn't like the first surgeon we saw at Holy Cross/Ft. Lauderdale who ruled out any minimally invasive type of surgery, which is what I'm looking for. We have appointments this week at UF Cancer Center in Orlando, Moffit Cancer Center in Tampa, Cleveland Clinic in Weston and one more smaller hospital down here in South Florida with a surgeon who is very highly regarded. I'm in the Coral Springs (suburb of Ft Lauderdale) area. I'm leaning toward trying to stay local so I don't have to endure a long car ride after surgery, but Moffitt is supposed to be first class. Would a 4 hour car ride be unbearable? Any ideas from someone who's been through it would be appreciated. Thanks, Nicole
  11. For the first time, cancer researchers are offering patients with early stage lung cancer either surgery or stereotactic ablative radiotherapy (SABR) and comparing the results in a phase III clinical study called the Stablemates Trial. SABR is a specialized form of radiation that has evolved in recent years to treat patients with just a few sessions – in this case just three treatments spread over eight days or less – using advanced imaging to deliver a higher dose. An early study has shown that SABR could be as effective as surgery among patients who did not qualify for surgery. The primary objective of this study is to test the hypothesis that the 3-year overall survival in high risk operable patients with Stage I NSCLC is greater in patient who undergo SAbR as compared to standard sublobar resection (SR). The new study now offers the same treatment to patients who are eligible for surgery but are at high risk for complications. To learn more and see a list of participating institutions, visit the trial web site.
  12. A person close to my immediate family is a Chemotherapy Nurse and works with some of the leading oncologists in the area where my mother is receiving treatments for Stage VI NSCLC (Adenocarcinoma). She has been a proponent of having my mom undergo Foundation One genetic testing to see if it will provide any insights to her cancer and help determine better treatment protocols. This test is expensive (around $5000) and rarely covered by health insurance, including my mom's plan, without petitioning. The doctors have said that this test should wait until they determine the success of the chemo and see whether more exploration is necessary, but by no means require it. Has anyone here had experience with Foundation One testing? I am trying to weigh its merits and learn more about the information it provides and whether it is worth the cost in helping my mom's cancer at this stage.
  13. LizG

    Mobility Help

    Hi everyone, Since I last was active in the forum my mom (Stage IV Adenocarcinoma, diagnosed 9/14) has had a severe decline in her mobility and regularly needs to use a wheelchair. She has been experiencing a host of digestive side effects from her pain medication which have left her pretty frequently unable to eat. The weakness this causes is the main contribution to her overall mobility problems. Mom is no longer able to navigate the stairs safely, so to take her to appointments and treatment we have to carry her down the stairs to the driveway to get her to the car. I am trying to find a way to have a wheelchair ramp installed at the house so that she can come in and out safely, especially as winter fast approaches. Right now the lowest quote is $4000... and can't be covered by insurance. Does anyone have a recommendation of where to find resources to help with the cost?
  14. Hello All, Nov. 2011 Follicular Lymphoma, Feb. 2013 Remission. Dec.2014 NSCLC ,Adenocarcinoma . Was 10 days before we were moving from NC to northern NY. Had to leave behind my oncologist in NC , whom was amazing, and to find one to treat the LC. Wow what a fog I was in. Pet scan showed no cancer other then the 1 1/2 cementer on the upper right lobe, Had a MRI of the brain , nothing , had another cat scan and nothing new showed. This week I will be starting chemo which will be Carboplation and Alimta. Once every 3 weeks for 12 weeks.I just finished the maintance chemo for the lymphoma . I know that all chemo is different and everyone reacts to it different. So I don't know what to expect, I don't know what questions to ask. I found this group and really enjoyed reading a lot of the post . I read some great and positive ones. So if any one can get me some information on any of this , I would sure appreciate any input. Thank you and god bless
  15. Hello, I am Liz and I've recently been approved to participate in Lungevity forums. I am 28 years old and my mom was recently diagnosed with stage 4 NSCLC. She is currently in chemotherapy and has also had radiation and another non-surgical procedure to help with some of her mets. I come from a large family and have several younger siblings, including two teenagers who live at home with my parents. This has been a rough few months for all of us. I am a part-time caretaker and full time cheerleader for my mom. I travel from where I live to stay with her 1-2 weeks each month. I am very much in need of people to talk to and share experiences with. I want to learn as much as I can about treatments and palliative care that can help my mom have the best quality of life possible, and I also need some help myself. I find it difficult to talk to my siblings or dad openly about my feelings and fears and hope that I can make some friends and find support here. I also want to learn how to be a better caretaker and an ally for my mom. I'm happy to become part your community and look forward to learning and growing with you all, and becoming a better advocate for lung cancer patients and a friend. Liz
  16. My mother was diagnosed about 2 years ago with Stage IIIb / IV NSCLC (one site w/pleural effusion). The tumor is inoperable due to location (and no radiation option either). She tested positive for the EGFR mutation and has been on Tarceva (after chemo - Alimta, Carboplatin, Avastin) for just over one year. Now the cancer is growing, and they tested for the T790 mutation, likely to be present once resistance to Tarceva shows. However, not only did they find the EGFR and T790 mutations, but they now see the KRAS mutation, which is highly unusual. The KRAS and EGFR are considered to be mutually exclusive. I'm interested to know if anyone has encountered this? We're getting her into a study for the T790, but not certain about options to address the KRAS mutation.
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