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LaurenH

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Everything posted by LaurenH

  1. So glad to hear it! Thank you for the update! I hope his follow up appointments go well. We'll be thinking of you and your family. Please keep us posted! Lauren -- Digital Community Manager LUNGevity Foundation
  2. Hi, Sherry, Welcome to LCSC. I'm sorry you've been through so much lately. We're glad that you found this community. It is a great place to connect with others who are navigating a lung cancer diagnosis and to share experiences. Please feel free to explore the discussion boards and join in on any of the conversations which resonate with you. When you have more information about your diagnosis, this community is a good place to ask questions. I am also happy to give you some information on LUNGevity's support programs. In the meantime, know that we are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  3. Thank you both for providing us with that feedback! We want to make sure people have a realistic idea of how long the study will take. Lauren -- Digital Community Manager LUNGevity Founation
  4. Whether you walk/run across the finish line, it still counts! Good luck with your training! Keep us posted! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  5. The research team at Tulane University is conducting an online survey of individuals with cancer histories. We are particularly interested in individuals with a history of lung cancer. The survey takes about 10 minutes and asks about people's beliefs about their health and healthcare, emotions and behaviors, and health history. We hope that the study will build knowledge that can help individuals with cancer to be more satisfied with their care. Here is a link to the survey http://tulanestudy.com his study has been approved by LUNGevity Foundation.
  6. I'm glad to read your good news LexieCat! And I had to smile at the Stay-Puft Marshmallow Man part, though I'm sorry you had to go through that. I hope all goes well at the oncologist today! Keep us posted. Lauren -- Digital Community Manager LUNGevity Foundation
  7. Hi, Susan, I'm glad you're on a break from treatment! I hope you get good scans! I always appreciate the wit and wisdom in your posts. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  8. Hi, Cristina, You and your husband are in our hearts. How are you both doing? Could you give us more details about your husband's targeted therapy? Then we may be able to give you more information or connect you to someone who has been on that treatment. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  9. Hi, Pearl, We're thinking of you and hoping you have some answers! Please post an update when you can. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  10. LaurenH

    update

    Hi, RayJ, We're thinking of you. Hope your surgery went well! Please post an update when you can. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  11. Hi, Jeffrey, I'm glad you're out of the hospital. How did the move go? With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  12. Thank you for sharing this, Isunique! Where is your 5K? I love the message on your running shirt. How is your training going? Lauren -- Digital Community Manager LUNGevity Foundation
  13. FDA Grants Genentech’s Alecensa Priority Review for Initial Treatment of People with ALK-Positive Lung Cancer South San Francisco, CA -- August 2, 2017 -- Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), announced today that the U.S. Food and Drug Administration (FDA) has accepted the company’s supplemental New Drug Application (sNDA) and granted Priority Review for Alecensa® (alectinib) as an initial (first-line) treatment for people with anaplastic lymphoma kinase (ALK)-positive, locally advanced or metastatic non-small cell lung cancer (NSCLC) as detected by an FDA-approved test. The FDA will make a decision on approval by November 30, 2017. “Phase III results showed Alecensa reduced the risk of disease worsening by more than half compared to the current standard of care and lowered the risk of tumors spreading to or growing in the brain by more than 80 percent,” said Sandra Horning, M.D., chief medical officer and head of Global Product Development. “We are working closely with the FDA to bring this medicine as an initial treatment for people with ALK-positive NSCLC as soon as possible.” This sNDA submission for Alecensa is based on results from the Phase III ALEX and Phase III J-ALEX studies. A Priority Review designation is granted to proposed medicines that, if approved, the FDA has determined to have the potential to provide a significant improvement in the safety or effectiveness of the treatment, prevention or diagnosis of a serious disease. Alecensa received Breakthrough Therapy Designation from the FDA in September 2016 for the treatment of adults with advanced ALK-positive NSCLC who have not received prior treatment with an ALK inhibitor. Breakthrough Therapy Designation is designed to expedite the development and review of medicines intended to treat serious or life-threatening diseases and to help ensure people have access to them through FDA approval as soon as possible. Breakthrough Therapy Designation was granted on the basis of the Phase III J-ALEX trial. Alecensa was granted accelerated approval by the FDA in December 2015 for the treatment of people with ALK-positive metastatic NSCLC who have progressed on or are intolerant to crizotinib. The ALEX study is part of the company’s commitment in the U.S. to convert the current accelerated approval of Alecensa in people with ALK-positive, metastatic NSCLC who have progressed on or are intolerant to crizotinib to a full approval as an initial treatment. Read the full press release here.
  14. Hi, LexieCat, Thanks for giving an update! I hope you get a good report from your surgeon and oncologist next week. Keep us posted! With gratitude, Lauren -- Digital Community Manger LUNGevity Foundation
  15. Hi, MichelleC, Welcome to LCSC. I am happy to read that your husband is responding well to treatment. Please continue to post and share updates! And of course, feel free to ask questions. I am glad to see that you've already connected with some of our members. In addition to the message boards, we also have some great member blogs, including Tom's! You've already received some great advice, and here is a link to some caregiving tips from LUNGevity's website. Please let me know if you'd like more information on any particular topic and I can help connect you with resources. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  16. Hi, Pegi, Welcome to LCSC. You'll find many other caregivers in this community, as well as survivors like Tom, who can share the patient's perspective. This is a great place to make connections and ask questions of others navigating a similar diagnosis. If you would like to learn more about LUNGevity's resources and programs for caregivers, I'm happy to share more information with you. If you're on Twitter, we host a monthly chat for caregivers. Our next chat is coming up next Wednesday, August 2, at 8PM EDT. Topics change from month to month. Next week, we'll be discussing legal issues for caregivers. Our host Danielle, is a LUNGevity volunteer, and caregiver to her parents (one has lc, one has a chronic health issue). She is extremely knowledgeable and is an active voice in our community, especially on social media. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  17. Dave, I'm very happy to read your update! I hope that you continue to gain your energy and your appetite back. We'll be thinking of you going into your upcoming scan and hoping for more positive results! You're a very positive presence in this community and we continue to be here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  18. Hi, Buckeye_wife, Welcome to LCSC. We are glad that you have joined this community. Please feel free to browse the discussion boards, read some of the blogs, and join in on the conversations. This is a great place to ask questions. If you are seeking some additional support, I would be happy to share information with you about some of our programs and resources. Denzie mentioned Columbus HOPE Summit, a one-day survivorship conference which will be held on October 7, featuring expert speakers, educational sessions, and many chances to connect with other survivors, caregivers, and advocates. Please let me know if you'd like more information about this conference. We hope that you will be able to attend! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  19. I was 52, a wife, mom and teacher when diagnosed with stage 3a NSC Adenocarcinoma lung cancer in September 2012. I had no symptoms and did not fit the criteria of a lung cancer candidate. An observant radiologist had noticed a small shadow in my lower right lobe when viewing an unrelated abdominal scan in 2010. Because I didn’t fit any of the LC criteria, no specialist or surgeon thought that it would be lung cancer. They adopted a “wait and see” plan using two six-month scans and then moved to a one-year scan at which that point indicated that my “nothing” spot had in fact grown and was probably lung cancer. My world had been turned upside down. I quickly had surgery to remove my bottom right lobe and several lymph nodes. Unfortunately, cancer was found in the lymph nodes and the tumor. This led to four rounds of chemotherapy (Cisplatin and Navelbine) and 25 treatments of radiation along with all the mental and physical issues that many people can only imagine. Cancer can be a very lonely disease even when you have a ton of support. I couldn’t find survivors in my area so I began searching out on-line groups that I could communicate with about my disease. This is where I discovered LUNGevity! The members of this group and all those associated with the organization wrapped their cyber arms around me and welcomed me into their world. This was literally a life-saving experience for me and continues to be part of my daily communication. Two years ago, people in the group began speaking about the National HOPE Summit in Washington, D.C. and how beneficial it was for both patients and caregivers. Because I am Canadian, I inquired as to whether my husband and I could attend. I was told of course we could! My husband and I attended HOPE Summit and that experience has changed my life. Meeting other survivors and hearing from physicians and researchers empowered me to return to my own country and begin asking questions about lung cancer research and most importantly, begin my work as a lung cancer advocate. The Summit allowed me to meet so many people who are advocates not only for their own health but also for lung cancer research and advocacy work. These people meet with politicians, organize, and participate in lung cancer fundraisers and teach so many of us about treatment options. Although Canada does not have as large a network, there is a small group of us who have been empowered to meet with politicians, educate and support others with the disease and spread the word about early lung cancer diagnosis, all because of our experience at a LUNGevity HOPE Summit. Education is power but knowing you are part of a strong, supportive, and knowledgeable group of individuals is invaluable. Thank you LUNGevity!
  20. By: Deborah R. Burns “Everybody can be great. Because anybody can serve. You only need a heart full of grace, A soul generated by love.” - Dr. Martin Luther King, Jr. Charlotte Jamison is many things: a Christian, a mother, a teacher, a friend, and a volunteer. Over the past two years, Charlotte has volunteered her time and talents to assist in the efforts of the LUNGevity Foundation’s Annual Breathe Deep DC 5K Walk. Charlotte serves as the backbone and chief fundraiser for Team Open Technology Group: (OTG) United for A Cure. Charlotte and my family have been friends longer than I can remember. She and my husband Leon had a special relationship. I still remember how they would often laugh together, share experiences, and enjoy working together on church projects. After my husband was diagnosed with lung cancer, she was the key person who supported me and walked me through that unforgettable journey. Since my husband’s death in 2011, she continues to be a huge inspiration in my healing. A member of New Canaan Baptist Church in Washington, DC. (Gregory M. Sims, Pastor), Charlotte has engaged the entire congregation in being part of this important cancer-fighting effort. She sets up a beautifully decorated table each year to receive donations and to recruit walkers for the OTG Team. She and her helpers work tirelessly documenting information, promoting the cause, and speaking to individuals about the walk. On the day of the walk she always arrives with a smile and eager to help. She immediately begins handing out goodie bags, gathering our Team and rallying “Team Spirit”. Many of the volunteers from other teams admire her enthusiasm and dedication for the cause. She inspires through example. I can never thank her enough for all that she brings to our Team and fighting this disease that claims thousands of lives each year. Did I mention that she’s 80 years young! God strengthens her to do His work. She often says “As long as the good Lord enables me to work, I’m going to work.” Open Technology Group’s cup runneths over for having Charlotte Jamison serve as a volunteer for OTG: United For A Cure. We are truly blessed by having her.
  21. Hi, Dave, I'm happy to hear that you've finished your chemo. How is your radiation going? Susan makes a great point about your support system. It sounds like you are surrounded by great people who care about you. Know that we're here for you too. Please post an update when you can! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
  22. Hi, Julie, Just wanted to check in re: your test results. We're hoping for good news! Please share an update when you can and let us know if you'd like some additional support. We are here for you! Lauren -- Digital Community Manager LUNGevity Foundation
  23. It came as quite a surprise when I was first diagnosed with Stage 3 lung cancer in 2007. It was an even bigger shock to learn that my lung cancer was caused by exposure to high levels of radon gas in my own home. I want to keep sharing my story with the hope that it might prevent others from getting lung cancer from radon gas. My husband and I did extensive renovations on our house to turn it into our dream home. About five years later, I developed a nagging cough. I went to the doctor, who sent me for a CT scan. The scan showed a mass in my right lung, so we scheduled an appointment with a pulmonologist to have a biopsy. The doctor who performed the biopsy called to tell me that I had lung cancer and that it was inoperable. He told me that I had four months to live. My husband had just returned from a trip to Africa and my mother was staying with us while she recovered from surgery. I turned on the T.V. and Jordin Sparks was singing, “This is My Now” and it just hit me that “you can sit here and feel sorry for yourself or you can fight it.” It’s crazy how the universe works. Shortly after I was diagnosed, we had our home tested for radon gas, the second leading cause of lung cancer. The test showed levels that were 6-times the EPA recommended action level. I had my right lung removed and underwent 5 weeks of radiation and 4 months of chemotherapy. I started to gain my strength back and started looking for a lung cancer community. In the beginning, there was very little information about lung cancer. I couldn’t find anyone to talk to. Then my daughter found out about LUNGevity and a walk they were holding in Manhatten Beach, California, called Breathe Deep Los Angeles. She said we should go there on a girls’ trip. Who wouldn't want to go to the beach after dealing with lung cancer treatment? My first Breathe Deep experience was so inspirational. There were over 350 people walking whose lives had somehow been touched by lung cancer. I’d never been to anything like that and there was nothing like that where I lived near Salt Lake City. When we got home, my other daughter said, “Why don’t we start one here?” So we held our first Breathe Deep Salt Lake City in 2012. I remained cancer free for 6 years, then in 2014 they found a fist-sized tumor in the front of my brain and a smaller tumor in the back which was metastasized lung cancer. They were able to remove those tumors and I went back into remission until that December, when they found 6 more brain tumors. I underwent surgeries to remove those, and then in January 2015, I started on a new chemo pill that I take orally. This treatment has worked very well for me and now there are four more on the market that would work just as well or better if this one stopped working. This is why I am so passionate to raise funds for lung cancer research. I am living proof that it works. The new treatments are so effective and amazing, but researchers need funding to find a cure. Lung Cancer research receives the least amount of federal funding of all types of cancer, yet it is the deadliest. I feel it is so important to raise funds to improve outcomes for lung cancer patients. I think the most rewarding thing about being a Breathe Deep event coordinator is to see people coming back year after year because they know it’s a good cause. It makes you realize how many people care about health and our lungs. The more people you talk to, the more you find that they have a connection to lung cancer, whether it’s a family member or friend. In addition to raising funds and awareness, we try to provide information at our event. We have speakers who talk about new discoveries in lung cancer treatment and radon. In fact, just because we’ve been raising awareness, a lot of the real estate agents are on board with getting homes they sell tested for radon gas. A local organization that does radon testing is even donating $20 of every radon test they do to LUNGevity. They’re promoting the walk to all of the real estate agencies that they work with. It’s amazing how generous people are. At first, I thought I can’t go around asking for free stuff. But I’ve found that people are willing to help! I really feel like the grassroots is the way to reach people. I’ve had more success talking to people one-on-one. We’ve done some women’s groups and I’ve spoken at classes on Radon. I also worked with a social worker to put together a lung cancer support group. The online groups are great, but sometimes, you just really need to talk so somebody in person. In addition to LUNGevity, I’ve also been doing a lot with the Utah Radon coalition. And I’m going to be speaking at the international radon convention in New Orleans in October. I want to show that there’s a face to lung cancer caused by radon gas. If it can happen to me, it can happen to anyone. Preventing lung cancer is so much easier and less costly than treating lung cancer.
  24. Hi, Jeffrey, We're thinking of you! I hope that you can get home soon! Please post an update when you can. Lauren -- Digital Community Manager LUNGevity Foundation
  25. Hi, Kaly, How are you and your brother doing? Please post an update when you can. And let us know if you have more questions! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation
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