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  1. Today
  2. What's Your Cancer Slogan?

    HOPE is a GOOD THING!
  3. What's your theme song?

    Slogan? "Hope is a Good Thing...and no Good Thing Ever Dies."
  4. Yesterday
  5. What's Your Cancer Slogan?

    HI all, I got another great suggestion for a new FUN topic - if you were to design a t-shirt, what slogan would you put on it? Bridget had the funny idea of "Lung Cancer: been there, done that, got the t-shirt" and my personal favorite is by Susan - "My Oncologist Does My Hair". So, what's your cancer slogan? What funny/odd/interesting lung cancer reference have you picked up along the way? This is my personal favorite -
  6. What's your theme song?

    If you come up with a good slogan/design, you should submit it for the National HOPE Summit T-Shirt contest! Lauren -- Digital Community Manager LUNGevity Foundation
  7. New Trial question

    Hi, David, How did your appointment go yesterday? Please share an update when you can. LUNGevity Clinical Trial Ambassadors are volunteers available to offer information about their personal experiences with clinical trials to fellow lung cancer patients who are considering these as a treatment option. Please let me know if you'd like more information about the program and how to get connected. With gratitude, Lauren
  8. Jordan Meyerson

    I was diagnosed with Stage IV Lung Cancer on September 19, 2016. The doctor told us that it was inoperable and radiation was not an option. It felt as though I’d been punched in the stomach. I immediately began thinking of my children and my wife, Lisa, and that my time here on Earth was very limited. I had no words that day, only utter despair. As the initial shock wore off, and the option of getting selected for a trial medication was offered, I realized that I may have a chance at fighting cancer and not letting cancer "fight" me. I’m ALK positive, so I was able to start taking a targeted therapy drug. It was shortly after the diagnosis and when I had no choice but to accept this as my fate, that I made the decision to fight this disease by becoming proactive in my care. I have always been a man of strong faith, and God has not failed me yet. Sometimes it takes something so big to appreciate waking up each day to your family and the people you love! I pray to God every night to give me another day. I was looking for an organization that focused on spreading awareness about lung cancer and funding research. I also liked that LUNGevity provided so many different types of support. We created a team for Breathe Deep Boca Raton, a 5K walk and run that raised lung cancer awareness and funds for LUNGevity for research and support programs. My wife and I are very active in our community, so we started reaching out to people to encourage them to come out and support the event. We advertised in local restaurants and reached out to local schools and youth recreation programs, and got some things going. My kids and I used social media to spread the word and I followed up with phone calls to remind people to show up. A friend of mine is in a band, so we asked them to come out and play live music at the event. Parts of the event are more somber, when we’re honoring the people we’ve lost to this disease, but other parts are uplifting and hopeful when we talk about research and the progress being made. I think the impact in the community is two-fold. First, it helps to raise awareness about lung cancer. I felt so strongly about making sure people realize that lung cancer isn’t only for smoker. And it also brings awareness about LUNGevity and that this a specific organization to help people impacted by lung cancer. I’m grateful for the research and medication and for the support of my family, friends, and the community. I hope the fundraising goes toward research to help find more targeted therapies. We need to fund research for treatment options that increase survival rates and help contain and manage the disease. I’m ALK positive, and there are treatments for that specific mutation, but I’d like them to find treatments for other mutations as well. I still look at the glass half full, because today, I am still here. My loving wife and children stand with me every day in this long, tedious, sometimes unbearable cancer journey. Through my positive energy and prayers we stay strong, and in September 2017, we celebrated my one-year cancerversary!
  9. Poorly differentiated non-cell carcinoma

    Thanks Tom Yes my surgeon offered to remove it years ago and told me the name of it and my GP removed one on the other side but the right was to tricky for him to do in the office, Just the timing and they want to cover all bases which is excellent. Now gaened six pounds since the fasting for my pet scan last Friday and hope to continue and keep my walking regime up during treatment.
  10. Poorly differentiated non-cell carcinoma

    Bob -- great news on the scan. Hope the lump biopsy yields good news also and your first line treatment is successful. Stay the course. Tom
  11. Learning about my father's cancer

    Hi Linda, Welcome here. I'm sorry to hear about your father's diagnosis. I'm glad you found us. This forum is a good place to find information, hope and support. Please let us know how we can support you. Bridget O
  12. Learning about my father's cancer

    I am very sorry to hear about your father's lung cancer recurrence. My mom is also battling a recurrence and had a lobectomy as well. This time, her cancer popped up on the back of her trachea - no options for surgery this time. I am not very familiar with the HER2 mutation, but it sounds like there are probably some clinical trials going on for it. Is your dad open to trying other things besides radiation?
  13. Hello. My father (83) was diagnosed with stage 4 lung cancer 3 weeks go. He was originally diagnosed 7 years ago, and had part of his lung removed. He is currently doing radiation to his spine. Found out he has a HER 2 mutation today. Will not do chemo, so Im just trying to learn as much as I can. Thanks.
  14. HER-2 mutation

    Just got the news today that my father has this mutation. Doctor said Herceptin won't be covered on his insurance, but will be checking into it.
  15. Clinical trials

    Haha I beat you to the punch! I compiled the attached spreadsheet last week. Thanks for your advice. I will talk with her GP once we see some progress reports from chemo. She went today. I know it tends to have a cumulative effect, but no side effects whatsoever yet. Gotta take the small victories where they come I guess! Clinical trials pdf.pdf
  16. Poorly differentiated non-cell carcinoma

    Bob, “ no further cancer” fantastic news! Praying mine shows nothing other than the original spot. Paula
  17. Poorly differentiated non-cell carcinoma

    HI Paula Got my Pet Scan done last Friday and the Doc called couple hours ago and they found no further cancer. They did find the small lump below my ear lobe been there for twenty years it is benign but they want to biopsy and the have started to setup for my treatment. Which will be for six weeks. Radiation five days week and Chemo once week. Hoping your scan turns out as well as mine. Bob
  18. Poorly differentiated non-cell carcinoma

    Pet scan done and I have the disk with the pictures. Now the wait for my appointment. Paula
  19. Last week
  20. HOPE Summit- lung cancer survivorship conference

    it's going to be HOPEtastic!
  21. Hi Folks! Just a reminder that registration for our National HOPE Summit in DC is underway. I can waive the regsitration fee for anyone who needs assistance with that. There are also a few travel grants for patients still available. Please read more here www.lungevity.org/dchope
  22. My Friend Randy

    It was mid-morning on a beautiful February Sunday in Texas when my phone rang. Randy’s name flashed on my phone screen and on realizing who it was, my mind raced to recall the last time we spoke. Pam his wife greeted me, a mild surprise. Randy and I grew up in the same Pennsylvanian township and attended high school together. Our lives parted with college and after an Army career took me everywhere but home. Randy settled in our hometown. We had many things in common including surviving lethal cancer. Five years ago, Randy and I had a fortuitous meeting online in a cancer blog site. Randy was diagnosed with Chronic Lymphocytic Leukemia (CLL). We soon reconnected and were gabbling away during marathon telephone calls. When we spoke, our wives went shopping! Our last conversation was shortly before the Super Bowl. Randy’s disease reoccurred and he was back in chemotherapy. He’d seen blood work indicators during the fall, yet he remained hopeful that treatment would again arrest his cancer. Randy’s form of CLL was characterized by adverse prognostic factors. CLL is rarely cured; never cured applied to Randy. While recurrence and mortality were frequent topics, hope and joy always dominated our conversations. We helped each other find meaning in our fragile lives. We coached away depression. We talked about everything: music, obtuse rock-in-roll lyrics, being young, high school girls, cars, motorcycles, politics, military tactics, bourbon, ballistics, physics, even the strength characteristics of bolts. We formed a bond of friendship experienced by few. Pam’s voice was a tell and then instantly I knew Randy was no longer a survivor. Our friendship ended on February 17th. Pam is without her beloved husband, and I am missing my dear friend. Randy was a man of great wisdom tempered by uncommon common sense. His virtues of kindness, selflessness, and courage stood like great pillars in our least-common-denominator world. Today, that world is smaller, colder, and far less interesting. For Pam. Stay the course.
  23. Clinical trials

    Hi All, I had a question about clinical trials. Basically: 1) How to get involved? I tried calling 1 or 2 and got helpful responses, but I'm not really sure if this is something I should be doing myself or if our oncologist should be involved. 2) How to pay? Are they normally covered by the organization offering the trial or does insurance normally cover them? There are a lot of them offered by institutions outside of my Mom's HMO network, and none of them discuss anything about payment. 3) Role if any of your regular oncologist or team of doctors. The context is this: My mom who was just diagnosed with SCLC is starting off with conventional chemo (and perhaps radiation). There's no particular need it seems for a clinical trial for phase 1...that would delay her care (and she is only starting chemo 5 weeks after diagnosis anyway), there are very few first-round trials for SCLC and given that the first round is typically highly effective and my Mom's cancer is very limited, there didn't seem to be any reason to do it right now. Seems like it could be very important for round 2 though...most stories I've come across of long-term survivors seem to have gotten good traction out of a clinical trial at some point. However, before we had the full info on the plan of care, I did research and found that there are A LOT of phase 1, 2 and 3 clinical trials in our area (NYC), and I gathered the full list. I researched which ones my Mom would be eligible for and summarized each one. Unfortunately, I was pretty disappointed with the reaction of my Mom's two oncologists. One was very negative on all of it and seemed to try to push us into her first round trial even though that would delay my Mom's treatment up to 6 weeks. She also made some other questionable recommendations like NOT getting a PET scan (even though the other doctors and literature all seem to think this is very important). So, we decided to stop seeing her. The second doctor (same medical group) is better in general, but on this topic it was frustrating to deal with her. I let her know that I have no idea how to go about doing any of this, and she was so cagey...trying to get info out of her was like pulling teeth. When I asked her how to determine which one was right, she just said "contact them and talk to them." When I asked her which ones seemed interesting or promising based on the sorts of drugs they were trialing and any past/similar research, she seemed hesitant to answer and basically said she thinks this "Rova-T" drug is promising and that we should consider anything involving that. I can't remember exactly what was said otherwise, but it just seemed that essentially if we go into a trial we will no longer be under her care and therefore she didn't want anything to do with it because we were going elsewhere. Is this normal or are doctors normally more collaborative on this question? How should I go about short-listing those to keep in mind for round 2? I've seen a few recent promising drugs in various clinical trials...has anyone heard of anything through the grapevine as to whether or not these are anywhere near showing actual results? Some examples here, but I also attached the full list I found. EZH2 Inhibitors: https://www.mskcc.org/blog/scientists-home-treatment-advance-chemotherapy-resistant-small-cell-lung Rova-T: https://adcreview.com/news/rovalpituzumab-tesirine-shows-early-promise-in-small-cell-lung-cancer/ Pentaris: http://www.digitaljournal.com/pr/3645959 Clinical Trials.pdf
  24. I’ve been reading everything I can find on the LUNGevity website. The pathologist report shows the pulmonary nodule was classified as “poorly differentiated non-small cell carcinoma.” The nodule is (3.7x2.8.2.7 cm) I’m reading this is the most aggressive but doesn’t say a lot more. Im hoping someone has information or experience with this. I wish the doctors office was open however I still would have to wait for an answer. I was doing ok until I read that and now a little nervous. Thanks for any information. Paula
  25. New Trial question

    Ok so now that I have reached the end of possible treatments Stanford hospital revaluated me and I qualify for 2 phase 1 trials. I was told 1 was an immunotherapy and the other is a chemotherapy. One is called JTX2011 the other is Macrogenx MGD00** I didn't write all the numbers down. I am a little nervous due to my bad experience with immunotherapy previously. Has anyone had experience with either of these? I go this coming Tuesday to meet with the trial teams to decide if I am willing to go through with either trial. During my recent hospital stay for flu and pneumonia, I was told that my cancer has grown a lot since my last scan Thanks David
  26. Earlier
  27. What's your theme song?

    Happy Monday!! Sorry about the lack of FUN last week - it was a hectic one! Bridget had a really great topic suggestion, so here it goes.... So many of us have a tag line, funny saying, theme song, etc when it comes to dealing with lung cancer. Bridget says Tom Petty's "Waiting is the Hardest Part" is a great theme song. Tom suggests that Michael Jackson's "Beat It" is also a great theme song. -both fit the bill very well! Susan's doc calls the battle of dealing with mets as "Whack a mole". And I've recently seen the roller coaster of emotions that accompanies cancer diagnosis called a psychological hurricane. So, let's hear some more theme songs, aka's, metaphors, etc. What do you call lung cancer or any part of diagnosis or treatment? What theme song runs through your head or what is a good theme song? If you were to write a book about your cancer experience, what would be its title? Let's have some FUN with this!!
  28. HER-2 mutation

    I am wondering if there is anyone else on this forum who has a HER-2 lung cancer mutation? I guess it is pretty rare (1-4% incidence). HER-2 is much more common in breast cancer. Thanks, Dyan
  29. Ninety Percent Mental

    Summer has ended and baseball is in World Series mode. I’m a long suffering Philadelphia Phillies fan — a Phanatic! To have a lifelong fascination with a mediocre baseball club requires supreme dedication, unusual perseverance, and a strong conviction that tomorrow will be a far better day. These attributes are prerequisites for facing a daunting lung cancer diagnosis and enduring the arduousness of treatment. Danny Ozark, once manager of the Phillies, took the team from perennial cellar dwellers to contenders. He explained his formula for success thusly: “Half this game is ninety percent mental!” Dismissing the missing half, the same can be said of life after lung cancer treatment. Presume diagnostic and treatment routines of lung cancer are largely similar; the unique and difficult challenges occur post treatment. Adding Ozark’s missing half, coping with post treatment life challenge "is ninety percent mental.” Individually, each will face a distinct challenge set but universally, life will be different than life before treatment. How so? First was a misplaced expectation to return to pre-diagnostic life. After NED, there were so many things I could no longer do. It took a while to realize I needed to carve out a new lifestyle. There is a new normal life after lung cancer, but the mental challenge is finding it. No one gives you new normal; you have to make it. Several side effects became chronic conditions. Coping becomes a mental challenge. Everyday, I play a round of mind over matter. Most days my mind wins but I have to live with losing days. Too many in a row and I need help. Fortunately, my wife is a godsend. Plan to have someone trusted close by. I’ve learned to go well out of my way to avoid confrontation. There are no “civil” discussion these days. There is disagreement, branding, insult and anger. My spin cycle goes one step farther to pain. If I walk away, I may have a good day. I won’t if I don’t. I’ve learned to control how I feel about something and not caring enough to have an opinion works well indeed. My new normal life is both challenging and enjoyable. Achieving that state involves application of Danny Ozark’s recipe for baseball success — new normal life “is ninety percent mental.” Stay the course.
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