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NikoleV

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  1. Help us understand what matters most to people with cancer! The Cancer Support Community (CSC) is looking for people to help develop a new tool to understand what matters most to people living with cancer. Please consider participating if you have ever received a cancer diagnosis, are at least 18 years old, and can read English. Participants who complete the survey will be offered the chance to enter a drawing for a $100 gift card. Five gift cards will be awarded for every 100 participants who complete the survey. If you complete the survey, you will have a chance to complete a short follow-up survey one week later and enter another drawing for a $25 gift card. To participate, please go to the following link: https://www.research.net/r/valuescsc If you want to learn more, please contact Kelly Clark at [email protected] or 267-295-3001. We hope you will consider participating in this important study!
  2. Gilda's Club Metro Detroit https://www.gildasclubdetroit.org/ The Gilda’s Club Metro Detroit lung cancer support group meets on the 3rd Monday of each month from 6:30-8:00 p.m. at our Clubhouse. Our clubhouse is located at 3517 Rochester Rd, Royal Oak, MI 48073. All support groups are completely free and are open to those diagnosed with lung cancer as well as their family and friends. Please call us for more information at (248)577-0800.
  3. Hi Jane! LUNGevity has caregiver mentors that we can match you with for one on one support by email and/or phone. Would you like to be matched with someone through our LifeLine program? Please let me know if I can help find the support you are looking for. Best Regards, Nikole www.lungevity.org/lifeline
  4. Join our team! We are currently seeking survivors and caregivers to join our support team. If you have a few hours a week to provide support and friendship to others through email and/or phone, please sign up at the link below. www.lungevity.org/lifeline
  5. Hi all, We have a 77 year old female looking for someone to talk to who has been diagnosed with SCLC. She does not mind if the support mentor is male or female. She just needs some support and encouragement from someone with the same diagnosis. Please let me know if you are willing to offer her an ear to listen. Thank you in advance. Best Regards, Nikole Support and Advocacy Coordinator [email protected]
  6. Texas and surrounding area LC Survivors! You're invited to attend the 2015 Dallas HOPE Summit! Register to reserve your spot today, registration is FREE. http://events.lungevity.org/site/Calendar?id=100821&view=Detail Dallas HOPE Summit 2015 Embassy Suites DFW South 4650 West Airport Freeway Irving, TX 75062 Friday, February 6, 2015 - Saturday, February 7, 2015 The LUNGevity HOPE Summit is a conference for lung cancer survivors. A survivor is anyone who has ever been diagnosed with lunch cancer of any stage, or in or out of active treatment. All conference sessions, speakers, and meals during the conference will be provided to all participants. The Welcome Reception and Regional HOPE Summit are free for lung cancer survivors, however space is limited and registration is required for all those who attend. This will be our second regional HOPE Summit in the Dallas area. Participants can attend this regional summit to connect with cancer experts, survivors and caregivers in the community to become inspired and informed about lung cancer and local resources.
  7. We have been asked to recruit for two advocacy opportunities (documentaries) for lung cancer survivors. Here is the criteria for each opportunity- if you are interested please email [email protected] for more information. #1 • White • Male • 50-70 yrs. • Squamous • Currently being treated, or post-progression (i.e. “after the cancer got worse”); Relevant experiences to discuss. #2 • Has recently progressed to 2nd line. • Is active (i.e. a PS 0-1) • Does not have any oncogenic drivers (i.e. EGFR or ALK mutations). • Is extremely motivated to live as long as possible. • Is either within Indianapolis or the surrounding states if possible. • Is willing to travel. • Is willing to share their story and speak in front of a large audience. • Is willing to allow a camera crew to videotape parts of their life once or twice a week for six weeks beginning in October or November. • Is willing to use a handheld camcorder and direct their family members to use a handheld camcorder to videotape personal and family events during their journey. • Believes that more time is valuable to them even if it is six weeks of extra time.
  8. 2014 LUNGevity HOPE Summit - Don't miss it, register today!! Friday, May 2, 2014 - Sunday, May 4, 2014 Keybridge Marriott Arlington, VA www.lungevity.org/dchope HOPE Summit is a conference for lung cancer survivors. All conference sessions, speakers, access to exhibits, and meals during the conference will be provided to all participants at NO COST beyond the $50 application fee. Welcome Reception: Friday, May 2, 2014, 7:30 pm, Keybridge Marriott Conference: Saturday, May 3, 2014, 8:00 am - 5:00 pm, Keybridge Marriott (Optional Dinner/Offsite Activity TBA) Sunday, May 4, 2014, 8:00 am - 2:00 pm Application Fee: There is a $50 application fee per person to hold your place at Hope Summit. This includes the sessions, materials, and meals. Email confirmation will be sent from [email protected] Be sure to add this email address to your safe senders list. If you are not accepted to attend the 2014 Summit your application fee will be REFUNDED and you will be invited to add your name to the 2015 waitlist. Cancellation Policy: After April 1, refunds will only be available to those who were not accepted to attend the 2014 Summit. AGENDA TOPICS: Understanding the Science Immunology Clinical Trials Pulmonary Rehabilitation Managing Your Care and Medical Team Life After Lung Cancer Passages in Caregiving Keeping Cancer at Bay - Author Lynne Eldridge, MD Write for Life - Author David Tabatsky Finalized agenda will be posted once all experts/speakers are confirmed. Conference Hotel Information: The conference will be held at the Keybridge Marriott in Arlington, VA. Discounted hotel rooms are $131 per night for single/double occupancy (http://www.marriott.com/hotels/travel/w ... e-marriott). Instructions on how to book your room at these discounted rates will be provided on your email confirmation. The Metro can take you from the airport to within walking distance of the hotel. Travel Grants: First-time registrants for HOPE Summit are encouraged to apply for a travel grant. Travel grants are available based on need and availability. There are a very LIMITED number of travel grants available. If you are in need of partial or full travel assistance to attend the 2014 HOPE Summit, we encourage you to fill out the travel grant application AFTER you’ve registered. Travel grants are for travel transportation to Washington, DC and 2-night hotel accommodations for May 2-4, 2014. The application for a travel grant can be found here. First consideration of travel grants will be given to first-time participants; however, we encourage all survivors to apply for a travel grant. For those making/paying for their own travel arrangements, we will have a discounted block of rooms at the Keybridge Marriott that we can reserve for you. Please let us know ASAP if you need us to book your room. Survivors’ Challenge: You can join the Survivors' Challenge by creating a fundraising page and collecting donations to support LUNGevity. You can even send emails out directly from your page, asking your friends and family to help you with the Challenge. And we'll provide fundraising tips to help you along. Raise $1,000 or more, and we'll reward you with an all-expenses-paid trip to the HOPE Summit including airfare, a two-night hotel stay, and ground transportation. Find more details on the Challenge here. If you have already registered and want to apply for a travel grant, click “TRAVEL GRANT” to begin.
  9. Hi Dana, Welcome to LCSC! We are sorry you had to find us, but we are so glad you did! Please keep us updated on your mom. Best Regards, Nikole
  10. Hello LCSC members. I am currently seeking a SCLC survivor to support a recently diagnosed 55 year old female with SCLC. If you can help, please message me as soon as possible. It can simply be email support to offer encouragement and hope. Please consider being a LifeLine to someone in need. Thank you so much! Thank you, Nikole
  11. Celebrating 16 years - That's great news Donna!
  12. Hi Cindy! I hope your husband is doing well with his recovery and I hope you are doing ok. Positive thoughts coming your way! Please update us when you get a chance. Take care! Best Regards, Nikole
  13. Hi Stockster! Congratulations on your one year anniversary! Positive thoughts on good news this week. Please keep us updated. We are so glad you found LUNGevity! Best Regards, Nikole
  14. We are currently looking for volunteers who want to support others impacted by lung cancer. Survivors, caregivers and families can volunteer to be a support partner and offer 1 on 1 support. Our LifeLine Support Partners volunteer to mentor and offer encouragement, advice, experience and hope to those newly diagnosed and anyone needing additional support through a one-on-one personal connection by email or telephone. LUNGevity’s LifeLine Support Partner program is utilized by dozens of hospitals and many support organizations to ensure that people impacted by lung cancer get the support they need. If you are in a place in your journey where you are ready to mentor others--volunteer to BE a lifeline to someone else today! Looking for one on one support? We can match you with someone that can offer you support, who's walked the same path and understands what you're going through. Find out more at the following link or email me (Nikole) with any questions at [email protected] http://events.lungevity.org/site/PageNa ... eLine.html
  15. We are currently looking for volunteers who want to support others impacted by lung cancer. Survivors, caregivers and families can volunteer to be a support partner and offer 1 on 1 support. Our LifeLine Support Partners volunteer to mentor and offer encouragement, advice, experience and hope to those newly diagnosed and anyone needing additional support through a one-on-one personal connection by email or telephone. LUNGevity’s LifeLine Support Partner program is utilized by dozens of hospitals and many support organizations to ensure that people impacted by lung cancer get the support they need. If you are in a place in your journey where you are ready to mentor others--volunteer to BE a lifeline to someone else today! Looking for one on one support? We can match you with someone that can offer you support, who's walked the same path and understands what you're going through. Find out more at the following link or email me (Nikole) with any questions at [email protected] http://events.lungevity.org/site/PageNa ... eLine.html
  16. The 2014 Lilly Oncology On Canvas Art Competition is now underway! Individuals diagnosed with any type of cancer, as well as their families, friends, and caregivers, are invited to express, through art and narrative, the life-affirming changes that give their cancer journeys meaning. Registration and Submission Deadline: June 30, 2014 http://www.lillyoncologyoncanvas.com/Pa ... tails.aspx Remember you don’t have to be a professional artist or writer. It’s the sharing of the story that counts. Presented by Lilly Oncology and the National Coalition for Cancer Survivorship (NCCS), the Lilly Oncology On Canvas Art Competition and Exhibition honors the journeys people face when confronted with a cancer diagnosis. Individuals diagnosed with any type of cancer, as well as their families, friends, and caregivers, are invited to express, through art and narrative, the life-affirming changes that give their cancer journeys meaning. The 2014 competition marks the 10-year anniversary of Lilly Oncology On Canvas. In honor of this milestone, Lilly Oncology will be launching the Hope Murals Project, bringing 10 inspirational pieces of art to 10 cities, in the form of 10 murals. Information on the Hope Murals Project and other anniversary activities coming soon! Download the complete 2014 Competition Rules, Registration, and Submission forms here (click link above). We look forward to receiving your entry and wish you good luck! Learn More For further information about Lilly Oncology On Canvas, please view responses to frequently asked questions; call 1-866-991-LOOC (5662) or email [email protected]
  17. Novartis is having their national oncology meeting in New Orleans January 12 through January 14 and they are looking for a survivor who's had a positive experience on their LDK378 trial to come and share their story. If you've had a positive experience with LDK378 and you're interested please get back to us with your contact info as soon as possible thank you! Please send your email to [email protected] Thanks, Nikole
  18. Reposting - please help if you can! Qualitative Research survey for those diagnosed with NSCLC and ALK+ gene Find A Cure Panel specializes in patient research for serious and rare diseases and conditions including lung cancer. And they are looking for U.S. patients to participate in an anonymous and confidential qualitative research for people who have the ALK+ gene. This research will be one telephone call with one moderator that will take about 45 - 60 minutes of your time. To qualify, you must: 1) Have been diagnosed with NSCLC. 2) Have been diagnosed with ALK+ gene If you participate in this research, FACP will donate $100 to Lungevity. If you are interested in participating, please email FACP at: [email protected] and reference ALK/Lungevity.
  19. Novartis is having their national oncology meeting in New Orleans January 12 through January 14 and they are looking for a survivor who's had a positive experience on their LDK378 trial to come and share their story. If you've had a positive experience with LDK378 and you're interested please get back to us with your contact info as soon as possible thank you! Please send your email to [email protected] Thanks, Nikole
  20. Novartis is having their national oncology meeting in New Orleans January 12 through January 14 and they are looking for a survivor who's had a positive experience on their LDK378 trial to come and share their story. If you've had a positive experience with LDK378 and you're interested please get back to us with your contact info as soon as possible thank you! Please send your email to [email protected] Thanks, Nikole
  21. We are currently looking for volunteers who want to support others impacted by lung cancer. Survivors, caregivers and families can volunteer to be a support partner and offer 1 on 1 support. Our LifeLine Support Partners volunteer to mentor and offer encouragement, advice, experience and hope to those newly diagnosed and anyone needing additional support through a one-on-one personal connection by email or telephone. LUNGevity’s LifeLine Support Partner program is utilized by dozens of hospitals and many support organizations to ensure that people impacted by lung cancer get the support they need. If you are in a place in your journey where you are ready to mentor others--volunteer to BE a lifeline to someone else today! Looking for one on one support? We can match you with someone that can offer you support, who's walked the same path and understands what you're going through. Find out more at the following link or email me (Nikole) with any questions at [email protected] http://events.lungevity.org/site/PageNa ... eLine.html
  22. We are currently looking for volunteers who want to support others impacted by lung cancer. Survivors, caregivers and families can volunteer to be a support partner and offer 1 on 1 support. Our LifeLine Support Partners volunteer to mentor and offer encouragement, advice, experience and hope to those newly diagnosed and anyone needing additional support through a one-on-one personal connection by email or telephone. LUNGevity’s LifeLine Support Partner program is utilized by dozens of hospitals and many support organizations to ensure that people impacted by lung cancer get the support they need. If you are in a place in your journey where you are ready to mentor others--volunteer to BE a lifeline to someone else today! Looking for one on one support? We can match you with someone that can offer you support, who's walked the same path and understands what you're going through. Find out more at the following link or email me (Nikole) with any questions at [email protected] http://events.lungevity.org/site/PageNa ... eLine.html
  23. Dr. Antoinette Wozniak on Small Cell Lung Cancer: Current Management and Future Directions June 21st, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... irections/ I must apologize for it taking so many months to get the webinar by Dr. Antoinette (Toni) Wozniak, from Wayne State University’s Karmanos Cancer Center in Detroit, on small cell lung cancer (SCLC). There has been so much timely content from the 2012 Lung Cancer Highlights, Santa Monica Targeted Therapies in Lung Cancer Conference, and then ASCO that this never saw the light of day. Let’s rectify that. SCLC has been declining in frequency, now accounting for about 12% of lung cancers in the US, but that’s still about 20-25,000 cases/year, so it definitely deserves our attention. In the first podcast episode listed here, Dr. Wozniak provides general background and introduces the staging system that is closely associated with how we treat SCLC: (Click link above to view the video/audio links) Wozniak Pt 1 SCLC Intro and Staging Video Podcast Wozniak Pt 1 SCLC Intro and Staging Audio Podcast The second part of her presentation covered both current treatments and future directions. Audio and video versions of this podcast are here: Wozniak Pt 2 SCLC Current Treatment and Future Directions Video Podcast Wozniak Pt 2 SCLC Current Treatment and Future Directions Audio Podcast I’ll try to get the figures and transcript added here very soon, but I didn’t want to delay any longer in getting this content out. I hope it’s helpful.
  24. ASCO Update: Is Avastin Critical in First Line Therapy and Maintenance for Advanced NSCLC? June 17th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... al-zinner/ Here’s another video we filmed at the end of ASCO 2013, in which Dr. Pennell from Cleveland Clinic summarizes the PRONOUNCE trial that compares two different commonly used regimens for first line and maintenance therapy in advanced NSCLC. What did we learn? (Click link above to view the video) ASCO Video: PRONOUNCE Trial of carbo/taxol/avastin –> bev vs. carbo/Alimta–> Alimta
  25. Quick ASCO Summary: Potential New Options for Lung Cancer June 15th, 2013 - by Dr. Jack West http://expertblog.lungevity.org/2013/06 ... ng-cancer/ Continuing with a second part after my summary of new presentations on management options for some of our current tools against lung cancer, today I wanted to briefly cover some of the more promising new agents and approaches emerging in lung cancer at ASCO 2013. Probably the biggest story in lung cancer from last year was the anti-PD1 immunotherapy now called nivolumab, an “immune checkpoint inhibitor” that essentially turns off the brakes of the body’s self-regulation that can keep our immune system from recognizing and fighting cancer cells. PD1, or “programmed death-1″ is a target protein on the T-cells of our own immune system, and PDL1 is the ligand (binding partner) for it, a protein on the tumor cell side. This year, we got an update of nivolumab that essentially corroborated that the preliminary results from last year in some heavily pre-treated patients are still holding up, are durable (1 year or longer) in many of them, and seem to now be about as common in those with an adenocarcinoma or non-squamous NSCLC as in squamous, where it appeared that there may be particular activity. This year, there was also some very early work combining this immunotherapy with nivolumab along with first line doublet chemo, and this work showed that the combination was feasible and had activity that looked like it may exceed what we expect to see from standard chemo alone. More to come on that, but the general momentum is such that the results with these immune-based treatments are promising enough that we should expect to see them not only left as second, third, or fourth line treatments but will soon see them tested more as first line for metastatic NSCLC and potentially soon in earlier stage patients who we’re treating for cures. Another early trial was with an anti-PDL1 agent called MPDL-3280A, which was also just tested in the first few dozen patients with lung cancer and found to have an objective tumor shrinkage rate (objective response) rate of 20-25%, with some of these being quite dramatic and potentially long-lasting — though this work is still too early to say much. However, it’s also important to note that the response rate of 20-25% almost certainly underestimates the benefit of this drug and other immunotherapies because it doesn’t include patients with “pseudo-progression“, a very important phenomenon with some immune-based treatments in which existing lesions may appear to grow and/or new lesions appear, then actually shrink dramatically after a subsequent scan is done if patients continue on this treatment. If biopsied, these lesions may actually show lots of T cells, the immune reaction fighting cells attacking the cancer, which may infiltrate a tumor or even make a tiny one appear as a new lesion (presumed to be the reason why a “new” nodule may appear and then melt away). This is critical to recognize, because oncologists aren’t used to seeing pseudo-progression, but the point is that if patients appear to be doing well clinically, it may be premature to discontinue an immunotherapy just because a new lesion happens to appear or existing lesions may grow — this may just precede a subsequent dramatic response. A couple of trials highlighted some potential new advances in second line treatment for metastatic NSCLC. The first is nindetanib, or BIBF-1120, an oral anti-angiogenic drug that actually inhibits several potentially relevant targets in cancer cells. A global phase III trial (the kind that can lead to a new treatment being approved for commercial use if found to be favorable) randomized about 1300 patients to second line Taxotere (docetaxel) chemotherapy alone to the same chemo with nindetanib and demonstrated a marginally significant improvement in progression-free survival (PFS) overall, but in patients with an adenocarcinoma, there was a much more striking improvement in PFS and overall survival (OS) (more than a 2 month improvement in median OS). The combination in second line was actually especially favorable in the patients with a metastatic lung adenocarcinoma that progressed early on first line doublet chemotherapy. This trial may be sufficient to lead to nindetanib becoming approved by the FDA and commercially available in the next 12 months, at least for patients with a lung adenocarcinoma (less likely to be approved for all metastatic NSCLC). Another second line trial was with the “heat shock protein inhibitor” (or HSP-90) inhibitor ganetestespib, also tested in combination with Taxotere and compared with Taxotere alone, in a randomized phase II trial (which can give a signal of value of the drug but isn’t big enough to confirm it should be approved for commercial use). This trial, called GALAXY-1, initially included patients with squamous as well as non-squamous NSCLC, but there were some safety concerns with the squamous cell NSCLC patients in the early part of the trial, so it continued to enroll only non-squamous patients. It showed an impressive superiority in PFS and OS for the combination in adenocarcinoma patients, and this was particularly true in the subset of patients who were enrolled on the second line trial more than 6 months after their initial diagnosis. This factor likely represents something about a more favorable biology of these cancers. In any event, there is a new, phase III trial moving forward (GALAXY-2) that will do the same randomization of Taxotere with or without ganetespib, only enrolling patients with metastatic non-squamous NSCLC (it may be only lung adenocarcinoma — not sure) who were diagnosed at least 6 months prior to the time of initiating second line treatment. Interestingly, it seems that the nindetanib may be a particularly appealing choice for patients with patients who progress early on first line chemo, while ganetespib may be particularly appealing for those patients who do much better with first line chemo +/- maintenance therapy. The final group of new agents I wanted to touch on is a series of second generation ALK inhibitors that are being tested in the approximately 4% of patients with an ALK rearrangement. While XALKORI (crizotinib) was a major contribution in lung cancer, albeit for a small subgroup, it was only “accidentally” discovered to be effective as an ALK inhibitor while being developed as a MET inhibitor. In contrast, the second generation ALK inhbitors, including one from Novartis called LDK-378, one from Ariad called AP-26113 (which also inhibits EGFR, but not nearly as well as it inhibits ALK), and one from the Japanese company Chugai called CH5424802, all have very impressive activity in ALK-positive patients, with response rates ranging from about 60-94%, seemingly as good in patients who have progressed on XALKORI as in those who are XALKORI-naive, leading to some very long-lasting responses (most still ongoing), and some responses of brain metastases, where XALKORI isn’t effective. These drugs are all in rapidly enrolling clinical trials and hold a great hope as an appealing option for patients who have already received and progressed on XALKORI, or perhaps as a first line treatment alternative to XALKORI. That’s enough for now. I think there’s reason to be hopeful about many of these strategies.
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