#LCSM Transcript

Healthcare social media transcript of the #LCSM hashtag.
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See #LCSM Influencers/Analytics.

ProfileTweet
Denise Cutlip @dennycee
Hi, all. Michigan in the house. Going to be driving first 15 minutes so looking forward to catching up. #lcsm
Janet Freeman-Daily @JFreemanDaily
Welcome to #LCSM Chat and #LungCancerAwarenessMonth (#LCAM)! In today's chat we will be discussing “Lung Cancer Advocacy -- What a Difference a Decade Makes.” More info on our blog at https://t.co/OPIcvpoGT2
Faces of Lung Cancer @LungCancerFaces
I’ll be tweeting from the @lcsmchat account tonight during #LCSM Chat. Join us now. #lcam
Janet Freeman-Daily @JFreemanDaily
@dennycee Welcome, Denise! #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Welcome to #LCSM Chat and #LungCancerAwarenessMonth (#LCAM)! In today's chat we will be discussing “Lung Cancer Advocacy -- What a Difference a Decade Makes.” More info on our blog at https://t.co/OPIcvpoGT2
Janet Freeman-Daily @JFreemanDaily
We'll get started in a few minutes--please take a moment to introduce yourselves. If you are a patient/caregiver, please share how long you’ve been living with lung cancer. #LCSM
#LCSM Chat @lcsmchat
RT @LungCancerFaces: I’ll be tweeting from the @lcsmchat account tonight during #LCSM Chat. Join us now. #lcam
#LCSM Chat @lcsmchat
RT @dennycee: Hi, all. Michigan in the house. Going to be driving first 15 minutes so looking forward to catching up. #lcsm
Dr. Amy C. Moore @acmoorephd
Amy Moore, VP of Global Engagement and Patient Partnerships at @LUNGevity, here. Good to be with y'all. #LCSM @lcsmchat
Gina Hollenbeck @GinaHollenbeck
@JFreemanDaily Living with lung cancer 6 years #LCSM
#LCSM Chat @lcsmchat
RT @acmoorephd: Amy Moore, VP of Global Engagement and Patient Partnerships at @LUNGevity, here. Good to be with y'all. #LCSM @lcsmchat
#LCSM Chat @lcsmchat
@RManochakian Welcome! Glad to have you join us. #lcsm
Canary Global Inc. @CanaryTech
RT @Garth_Nicholas1: 4 Nov: 4 Nov: Chemoradiation & patient selection For Lung Cancer Awareness Month #LCAM I’m going to summarize 30 important lung cancer trials over 30 days. These posts are directed at non-medical professionals, with descriptions of the results and of what makes a good trial.#lcsm 1/11 https://t.co/lmWVWTRmS6
Janet Freeman-Daily @JFreemanDaily
I’m your moderator Janet Freeman-Daily: writer (https://t.co/OBCc87ZwkG), science geek, stage IV #lungcancer patient (10 year SURVIVOR!) and research advocate #LCSM
#LCSM Chat @lcsmchat
@acmoorephd @LUNGevity Hi there! Thanks for joining us. #lcsm
Dr. Amy C. Moore @acmoorephd
Join us for tonight's @lcsmchat on the topic of #lungcancer #advocacy for #LungCancerAwarenessMonth #lcsm #lcam
#LCSM Chat @lcsmchat
RT @GinaHollenbeck: @JFreemanDaily Living with lung cancer 6 years #LCSM
Janet Freeman-Daily @JFreemanDaily
If you are new to Twitter chats and/or #LCSM Chat, you might find our primer on how to participate helpful https://t.co/5g28sSQQLb #LCSM
#LCSM Chat @lcsmchat
@GinaHollenbeck @JFreemanDaily Hi Gina! Great to “see” you. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: I’m your moderator Janet Freeman-Daily: I’m your moderator Janet Freeman-Daily: writer (https://t.co/OBCc87ZwkG), science geek, stage IV #lungcancer patient (10 year SURVIVOR!) and research advocate #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: If you are new to Twitter chats and/or #LCSM Chat, you might find our primer on how to participate helpful https://t.co/5g28sSQQLb #LCSM
Janet Freeman-Daily @JFreemanDaily
Please remember to use #lcsm in all your tweets so others participating in the chat can see what you tweet.
Deb Smith 🌻🟧 @debsmithbeach
#LCSM Deb in chilly NH here. I was dx’d 10 yrs ago in August, 2011, with Stage 4 EGFR lung c. I’ve been on Tagrisso since Halloween 2013, at first on a clinical trial. Thanks, research!
Janet Freeman-Daily @JFreemanDaily
If you prefer just to listen, please tweet “#LCSM” so we know you’re in the audience.
Peggy Dennis @peggyddennis
Peggy joining from Denver. #LCSM
Janet Freeman-Daily @JFreemanDaily
Note: Twitter allows tweets up to 280 characters, but some tweetchat apps (like https://t.co/A2M7gXQ66L) will not display tweets longer than 140. #LCSM
#LCSM Chat @lcsmchat
Sorry to hear about the recurrence. Best hopes! #lcsm
Laura Greco @lgreco_ny
Hello from New York #lcsm
Lung Cancer Sux @LungCancerSux
RT @JFreemanDaily: Welcome to #LCSM Chat and #LungCancerAwarenessMonth (#LCAM)! In today's chat we will be discussing “Lung Cancer Advocacy -- What a Difference a Decade Makes.” More info on our blog at https://t.co/OPIcvpoGT2
Michael Gieske, M.D. @mrgieske
Director lung cancer screening @StElizabethNKY #lcsm
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@JFreemanDaily Welcome & kudos to our moderator @JFreemanDaily who is one the most dedicated & impactful #LungCancerAdvocate #LCSM
Junaid Hussain @docjunaid
RT @Joshua_Reuss: Today insurance company denied entrectinib for my patient with newly diagnosed ROS1+ NSCLC. appeal needed. Earlier this week delayed approval of docetaxel forced rescheduling of treatment for another pt. Both FDA approved therapies. THIS HAS TO STOP! @n8pennell #LCSM
Janet Freeman-Daily @JFreemanDaily
I will announce FOUR topics (T1 T2 etc). Pls label your answers with T1, T2, etc to make transcript easier to follow. #LCSM
Angela Churie Kallhauge @AngelaAchurie
#LCSM
NCI Cancer Stats @NCICancerStats
Are there hot-spot regions for #LungCancer in your state? Look at the variation in Missouri counties. Visit the State Cancer Profiles website and select your home state to learn more https://t.co/TRmmwNZunY #LCSM https://t.co/ApVUyPkYpB
Janet Freeman-Daily @JFreemanDaily
@RManochakian Thank you for your kind words! #LCSM
#LCSM Chat @lcsmchat
I see you @CroixDenise. Welcome. #lcsm
#LCSM Chat @lcsmchat
@AngelaAchurie Welcome Angela! #lcsm
kristen kimball @KimballKristen
Kristen (Kris) Kimball from Boston, tuning in late, hello everyone! #LCSM
#LCSM Chat @lcsmchat
RT @RManochakian: @JFreemanDaily Welcome & kudos to our moderator @JFreemanDaily who is one the most dedicated & impactful #LungCancerAdvocate #LCSM
Janet Freeman-Daily @JFreemanDaily
We’ll start with Topic T1 in a minute … #LCSM
#LCSM Chat @lcsmchat
@mrgieske @StElizabethNKY Welcome Doctor! Thanks for joining. #lcsm
Lung Cancer Sux @LungCancerSux
What a difference a decade makes! #LCSM Glad we are still here!
#LCSM Chat @lcsmchat
@lgreco_ny Hey Laura! Fun convo today. Lol. #lcsm
#LCSM Chat @lcsmchat
@peggyddennis Hi Peggy! #lcsm
#LCSM Chat @lcsmchat
@debsmithbeach Hey Deb! #lcsm
Janet Freeman-Daily @JFreemanDaily
T1. What did #lungcancer advocacy look like when you joined the lung cancer community? Who was involved? What was being done? What activity was visible outside the LC community? #LCSM
#LCSM Chat @lcsmchat
RT @debsmithbeach: #LCSM Deb in chilly NH here. I was dx’d 10 yrs ago in August, 2011, with Stage 4 EGFR lung c. I’ve been on Tagrisso since Halloween 2013, at first on a clinical trial. Thanks, research!
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Please remember to use #lcsm in all your tweets so others participating in the chat can see what you tweet.
#LCSM Chat @lcsmchat
RT @JFreemanDaily: If you prefer just to listen, please tweet “#LCSM” so we know you’re in the audience.
#LCSM Chat @lcsmchat
RT @peggyddennis: Peggy joining from Denver. #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Note: Note: Twitter allows tweets up to 280 characters, but some tweetchat apps (like https://t.co/A2M7gXQ66L) will not display tweets longer than 140. #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: Hello from New York #lcsm
#LCSM Chat @lcsmchat
RT @mrgieske: Director lung cancer screening @StElizabethNKY #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: I will announce FOUR topics (T1 T2 etc). Pls label your answers with T1, T2, etc to make transcript easier to follow. #LCSM
#LCSM Chat @lcsmchat
RT @AngelaAchurie: #LCSM
#LCSM Chat @lcsmchat
@MarksPhone Hi Mark! #lcsm
#LCSM Chat @lcsmchat
RT @KimballKristen: Kristen (Kris) Kimball from Boston, tuning in late, hello everyone! #LCSM
Laura Greco @lgreco_ny
T1: There really wasn't a whole heck of a lot out there. It felt like there were stories about the same 10 people, and I soon knew them all. #lcsm
#LCSM Chat @lcsmchat
@KimballKristen Hi Kris! #lcsm
#LCSM Chat @lcsmchat
RT @LungCancerSux: What a difference a decade makes! #LCSM Glad we are still here!
#LCSM Chat @lcsmchat
@LungCancerSux We’re glad, too. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T1. What did #lungcancer advocacy look like when you joined the lung cancer community? Who was involved? What was being done? What activity was visible outside the LC community? #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: T1: T1: There really wasn't a whole heck of a lot out there. It felt like there were stories about the same 10 people, and I soon knew them all. #lcsm
C. 'Harris' Floudas @chfloudas
RT @n8pennell: When will this reach a tipping point that we’ll do something about it?? #denialofcare @MedicineForward @tmprowell @gabrieldane
#LCSM Chat @lcsmchat
@DevikaDasMD @JFreemanDaily Welcome! #lcsm
Michael Gieske, M.D. @mrgieske
My pleasure! #lcsm chat
Janet Freeman-Daily @JFreemanDaily
When I became active in #lungcancer advocacy in 2013, a few big lung cancer advocacy orgs existed, #LCSM hand't started yet, and a few small #LCAM events were held (but they worked hard to attract attendance and funding). @1111linno and a few others were blogging.
#LCSM Chat @lcsmchat
RT @JFreemanDaily: When I became active in #lungcancer advocacy in 2013, a few big lung cancer advocacy orgs existed, #LCSM hand't started yet, and a few small #LCAM events were held (but they worked hard to attract attendance and funding). @1111linno and a few others were blogging.
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@lgreco_ny T1; Agree with Laura @lgreco_ny When I first joined the field, there wasn’t much there as far as #LungCancerAdvocacy but it has evolved since then #lcsm
Peggy Dennis @peggyddennis
T1- 5 years ago, Janet was the first advocate I found on the web. I watched/read everything I could find. GO2, Lungevity, SURVIVEIT, LCRF. #LCSM
#LCSM Chat @lcsmchat
T1: When I started back in 2012, there wasn’t much out there (with a few exceptions) and very little unity. #LCSM
#LCSM Chat @lcsmchat
RT @RManochakian: @lgreco_ny T1; Agree with Laura @lgreco_ny When I first joined the field, there wasn’t much there as far as #LungCancerAdvocacy but it has evolved since then #lcsm
#LCSM Chat @lcsmchat
RT @peggyddennis: T1- 5 years ago, Janet was the first advocate I found on the web. I watched/read everything I could find. GO2, Lungevity, SURVIVEIT, LCRF. #LCSM
Vivek Murthy @VivekMurthy10
RT @DrewMoghanaki: Here's how people at risk for lung cancer present to their surgical, radiation, and medical oncologists if they are screened or not. #lcsm #radonc @OtisBrawley @IASLC @JenLewisMD https://t.co/ODqtNr4rY6 https://t.co/vqmhiSWqqr
Janet Freeman-Daily @JFreemanDaily
T1: In 2013, a few dedicated research advocates were involved in NCI Lung Cancer SPORE research. Not a lot of #lungcancer patients felt healthy and energetic enough to get out and tell their stories. @ACSCAN and @LungAssociation hadn't engaged with the LC community yet. #LCSM
kristen kimball @KimballKristen
T1 Husband Dave was dx'd w/ stage4 EGFR+ LC in may 2012,we only learned about @Lungevity when he began a trial in Sept. 2014, from his doc @LeciaSequist at @MGHCancerCenter. There was little for "caregivers", advocacy-wise. #LCSM
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@lgreco_ny #LungCancerAdvocacy has evolved significantly over the last decade, which is the same era in which we witnessed so much progress & advancement in diagnosis & manager of #LungCancer. Advocacy now is a crucial part of the fight against lung cancer #lcsm @lcsmchat
Preventive Medicine Bot @PreventiveBot
RT @NCICancerStats: Are there hot-spot regions for #LungCancer in your state? Look at the variation in Missouri counties. Visit the State Cancer Profiles website and select your home state to learn more https://t.co/TRmmwNZunY #LCSM https://t.co/ApVUyPkYpB
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T1: T1: In 2013, a few dedicated research advocates were involved in NCI Lung Cancer SPORE research. Not a lot of #lungcancer patients felt healthy and energetic enough to get out and tell their stories. @ACSCAN and @LungAssociation hadn't engaged with the LC community yet. #LCSM
Preventive Medicine Bot @PreventiveBot
RT @JFreemanDaily: T1. What did #lungcancer advocacy look like when you joined the lung cancer community? Who was involved? What was being done? What activity was visible outside the LC community? #LCSM
Laura Greco @lgreco_ny
@peggyddennis 6 plus years ago, Inspire was big. #lcsm I followed Janet there as well! #lcsm
#LCSM Chat @lcsmchat
RT @KimballKristen: T1 Husband Dave was dx'd w/ stage4 EGFR+ LC in may 2012,we only learned about @Lungevity when he began a trial in Sept. 2014, from his doc @LeciaSequist at @MGHCancerCenter. There was little for "caregivers", advocacy-wise. #LCSM
kristen kimball @KimballKristen
@lcsmchat Hi Deana! <3 #LCSM
#LCSM Chat @lcsmchat
RT @RManochakian: @lgreco_ny #LungCancerAdvocacy has evolved significantly over the last decade, which is the same era in which we witnessed so much progress & advancement in diagnosis & manager of #LungCancer. Advocacy now is a crucial part of the fight against lung cancer #lcsm @lcsmchat
Preventive Medicine Bot @PreventiveBot
RT @JFreemanDaily: T1: T1: In 2013, a few dedicated research advocates were involved in NCI Lung Cancer SPORE research. Not a lot of #lungcancer patients felt healthy and energetic enough to get out and tell their stories. @ACSCAN and @LungAssociation hadn't engaged with the LC community yet. #LCSM
Crystal @CCuadra8
Just listening #LCAM #LCSM
Henning Willers, MD @HenningWillers
RT @RManochakian: @lgreco_ny #LungCancerAdvocacy has evolved significantly over the last decade, which is the same era in which we witnessed so much progress & advancement in diagnosis & manager of #LungCancer. Advocacy now is a crucial part of the fight against lung cancer #lcsm @lcsmchat
Deb Smith 🌻🟧 @debsmithbeach
T1. I got invoked with the ALA in the spring of 2012, volunteering and fundraising in the Cycle the Seacoast event. Through them I gradually learned about advocacy. #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: @peggyddennis 6 plus years ago, Inspire was big. #lcsm I followed Janet there as well! #lcsm
Michael Gieske, M.D. @mrgieske
I have known and admired @GinaHollenbeck for over 2 yr. I really, though, just got involved with the lung cancer community on Twitter a few months ago through the @TheWRP4LC #lcsm chat
Janet Freeman-Daily @JFreemanDaily
Topic T2 is coming up … #LCSM
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@KimballKristen @LUNGevity @LeciaSequist @MGHCancerCenter Thank you @KimballKristen for all what you do as #LungCancerAdvocate 🙏🙏 #TogetherAgainstLungCancer #lcsm
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@JFreemanDaily In 2013, I was watching friend die of metastatic lung cancer & supporting my mom thru a breast cancer diagnosis when I received my own BC dx. Oddly enough #lcsm became a haven of support for me ❤️ I was impressed by rapid dissemination of research & clinical/patient collaboration
colleen ziegler @ZieglerColleen
#LCSM Colleen from Rochester joining
#LCSM Chat @lcsmchat
@lgreco_ny @peggyddennis I met and recruited poor Janet (squanch!) from @teaminspire as well! #lcsm
#LCSM Chat @lcsmchat
RT @CCuadra8: Just listening #LCAM #LCSM
#LCSM Chat @lcsmchat
@CCuadra8 Hi Crystal! #lcsm
Janet Freeman-Daily @JFreemanDaily
Thanks for joining #LCSM Chat during #LCAM, Stacey!
#LCSM Chat @lcsmchat
RT @debsmithbeach: T1. I got invoked with the ALA in the spring of 2012, volunteering and fundraising in the Cycle the Seacoast event. Through them I gradually learned about advocacy. #LCSM
#LCSM Chat @lcsmchat
RT @mrgieske: I have known and admired @GinaHollenbeck for over 2 yr. I really, though, just got involved with the lung cancer community on Twitter a few months ago through the @TheWRP4LC #lcsm chat
Janet Freeman-Daily @JFreemanDaily
T2. What factors drove or contributed to the evolution of lung cancer advocacy over the past 10 years? #LCSM
#LCSM Chat @lcsmchat
RT @coffeemommy: @JFreemanDaily In 2013, I was watching friend die of metastatic lung cancer & supporting my mom thru a breast cancer diagnosis when I received my own BC dx. Oddly enough #lcsm became a haven of support for me ❤️ I was impressed by rapid dissemination of research & clinical/patient collaboration
#LCSM Chat @lcsmchat
@coffeemommy @JFreemanDaily Hi Stacey! Glad you could join us. xo #lcsm
Dr. Amy C. Moore @acmoorephd
RT @coffeemommy: @JFreemanDaily In 2013, I was watching friend die of metastatic lung cancer & supporting my mom thru a breast cancer diagnosis when I received my own BC dx. Oddly enough #lcsm became a haven of support for me ❤️ I was impressed by rapid dissemination of research & clinical/patient collaboration
#LCSM Chat @lcsmchat
RT @ZieglerColleen: #LCSM Colleen from Rochester joining
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@JFreemanDaily Stopping in to say "HI" and share some hugs. I know this is an intense month for all of you. So good to have more 'awareness' but also understand that the constant fight for urgency and ACTION is exhausting. #lcsm in #LCAM
#LCSM Chat @lcsmchat
@ZieglerColleen Hey Colleen! #lcsm
Dr. Amy C. Moore @acmoorephd
T1: I entered this wonderful community 3.5 years ago and have been embraced, educated and empowered by so many patients, caregivers and researchers #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2. What factors drove or contributed to the evolution of lung cancer advocacy over the past 10 years? #LCSM
#LCSM Chat @lcsmchat
RT @coffeemommy: @JFreemanDaily Stopping in to say "HI" and share some hugs. I know this is an intense month for all of you. So good to have more 'awareness' but also understand that the constant fight for urgency and ACTION is exhausting. #lcsm in #LCAM
#LCSM Chat @lcsmchat
RT @acmoorephd: T1: T1: I entered this wonderful community 3.5 years ago and have been embraced, educated and empowered by so many patients, caregivers and researchers #lcsm
Janet Freeman-Daily @JFreemanDaily
In 2011, just a few months after my diagnosis, the first targeted therapy for #lungcancer was approved by @US_FDA -- crizotinib for ALK+ NSCLC. Another targeted therapy was available, but not just for EGFR+ NSCLC. #LCSM
Lung Cancer Sux @LungCancerSux
T2: so much hope! Many actionable markers and new FDA approved active therapies #LCSM
Michael Gieske, M.D. @mrgieske
I am part of an amazing team @StElizabethNKY We know someday soon lung cancer screening will change. For now we use the USPSTF criteria and have performed 20,000 LDCT lung cancer screens, nearly 70% in early stage #lcsm chat
#LCSM Chat @lcsmchat
I see you @HenningWillers! #lcsm
Dr. Amy C. Moore @acmoorephd
RT @coffeemommy: @JFreemanDaily Stopping in to say "HI" and share some hugs. I know this is an intense month for all of you. So good to have more 'awareness' but also understand that the constant fight for urgency and ACTION is exhausting. #lcsm in #LCAM
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@JFreemanDaily Of course! You've been on my mind. ❤️ A lot has changed in the last decade (well, I've only been in advocacy since 2013) but still so much work to do - it takes all ages and stages to make it happen. #lcsm
Janet Freeman-Daily @JFreemanDaily
T2: As more patients started targeted therapy (which generally has fewer side effects than more traditional therapies), more LC patients had energy and interest in advocacy. #LCSM
#LCSM Chat @lcsmchat
I see you @ZeynepHG! Thanks for joining. #lcsm
kristen kimball @KimballKristen
@ZieglerColleen Hi Colleen!! <3 #LCSM
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@acmoorephd @lcsmchat @JFreemanDaily Good to see you too - and we need to make a real live plan for coffee #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: In 2011, just a few months after my diagnosis, the first targeted therapy for #lungcancer was approved by @US_FDA -- crizotinib for ALK+ NSCLC. Another targeted therapy was available, but not just for EGFR+ NSCLC. #LCSM
#LCSM Chat @lcsmchat
RT @LungCancerSux: T2: T2: so much hope! Many actionable markers and new FDA approved active therapies #LCSM
#LCSM Chat @lcsmchat
RT @mrgieske: I am part of an amazing team @StElizabethNKY We know someday soon lung cancer screening will change. For now we use the USPSTF criteria and have performed 20,000 LDCT lung cancer screens, nearly 70% in early stage #lcsm chat
Peggy Dennis @peggyddennis
T2 - patients living longer without a doubt. Sharing stories and pushing boundaries. RESEARCH and bio marker/NGS testing. #lcsm
#LCSM Chat @lcsmchat
RT @coffeemommy: @JFreemanDaily Of course! You've been on my mind. ❤️ A lot has changed in the last decade (well, I've only been in advocacy since 2013) but still so much work to do - it takes all ages and stages to make it happen. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2: T2: As more patients started targeted therapy (which generally has fewer side effects than more traditional therapies), more LC patients had energy and interest in advocacy. #LCSM
#LCSM Chat @lcsmchat
RT @peggyddennis: T2 - patients living longer without a doubt. Sharing stories and pushing boundaries. RESEARCH and bio marker/NGS testing. #lcsm
Laura Greco @lgreco_ny
@JFreemanDaily T2: And patients started living longer. That helps quite a bit. #lcsm
Andres F. Cardona @AndresFCardonaZ
RT @n8pennell: This is my main issue with this study. For stage 2 NSCLC adjuvant chemo probably CURES 10% and for stage 3 15% of people. Omitting in TKI arm doesn't make sense, but OS identical in both arms does that suggest TKI efficacy~chemo? Given abysmal DFS in both arms maybe not. #LCSM
Dr. Amy C. Moore @acmoorephd
T2: #research is extending and improving lives, giving patients the ability to engage more fully in #advocacy at all levels. More survivors = more advocates #lcsm
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
T2: The lung cancer medical community (as well as other cancers communities) realized that having the patient’s voice is essential to further advance & enhance lung cancer management. At the end of the day it’s all about the patients. #lcsm
#LCSM Chat @lcsmchat
T2: More survivors who feel well enough to get involved has really changed the lung cancer advocacy landscape. #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: @JFreemanDaily T2: @JFreemanDaily T2: And patients started living longer. That helps quite a bit. #lcsm
Janet Freeman-Daily @JFreemanDaily
T2: In past 10 years, research has given #lungcancer over a dozen new targeted therapies, a handful of immune checkpoint inhibitor therapies (AKA immunotherapy), improved radiation protocols, and LDCT screening for early detection. More healthy patients = more advocates. #LCSM
#LCSM Chat @lcsmchat
RT @acmoorephd: T2: T2: #research is extending and improving lives, giving patients the ability to engage more fully in #advocacy at all levels. More survivors = more advocates #lcsm
#LCSM Chat @lcsmchat
RT @RManochakian: T2: T2: The lung cancer medical community (as well as other cancers communities) realized that having the patient’s voice is essential to further advance & enhance lung cancer management. At the end of the day it’s all about the patients. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2: T2: In past 10 years, research has given #lungcancer over a dozen new targeted therapies, a handful of immune checkpoint inhibitor therapies (AKA immunotherapy), improved radiation protocols, and LDCT screening for early detection. More healthy patients = more advocates. #LCSM
Laura Greco @lgreco_ny
T2: I also think a younger patient cohort has been beneficial to the movement. I think we may be less satisfied by the status quo. #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @acmoorephd: T1: T1: I entered this wonderful community 3.5 years ago and have been embraced, educated and empowered by so many patients, caregivers and researchers #lcsm
ann price @aepriceny
@JFreemanDaily @lcsmchat #lcsm hi sorry I’m late. Joining to learn!
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @JFreemanDaily Stopping in to say "HI" and share some hugs. I know this is an intense month for all of you. So good to have more 'awareness' but also understand that the constant fight for urgency and ACTION is exhausting. #lcsm in #LCAM
Deb Smith 🌻🟧 @debsmithbeach
Involved… #LCSM
Janet Freeman-Daily @JFreemanDaily
RT @coffeemommy: @JFreemanDaily Of course! You've been on my mind. ❤️ A lot has changed in the last decade (well, I've only been in advocacy since 2013) but still so much work to do - it takes all ages and stages to make it happen. #lcsm
Dr. Amy C. Moore @acmoorephd
T2: #research is extending and improving lives, giving patients the chance to engage more fully in #advocacy at all levels. More #survivors = more #advocates #lcsm
#LCSM Chat @lcsmchat
I see you @fzmacero! Thanks for joining. #lcsm
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
#LungCancerAdvocacy helps support & promote all the ongoing research & science advancements to #ConquerLungCancer #lcsm & ensures Equity in health care delivery
Henning Willers, MD @HenningWillers
@lcsmchat In and out while getting kids to bed🤗🤗🤗 ❤ what you are all doing & stories & passion #LCSM #lcam https://t.co/Px9sudoU6W
#LCSM Chat @lcsmchat
Hi @MichelleOtters2! Thanks for joining. #lcsm
#LCSM Chat @lcsmchat
Hi @aepriceny! Thanks for joining. #lcsm
Rosemary Conway @SLPChitChat
#LCSM I was diagnosed with NSCLC in Aug 2017. Stage IV. Involved with Lungevity and TWRP!
kristen kimball @KimballKristen
T2 Patients living longer w/ better QOL and the knowledge we were so poorly funded that action was needed. I expect excitement over continued progress helped? Seeing more drugs approved, more trial opps? #LCSM
Dr. Amy C. Moore @acmoorephd
RT @JFreemanDaily: T2: T2: In past 10 years, research has given #lungcancer over a dozen new targeted therapies, a handful of immune checkpoint inhibitor therapies (AKA immunotherapy), improved radiation protocols, and LDCT screening for early detection. More healthy patients = more advocates. #LCSM
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@peggyddennis Sharing stories is HUGE. People assume cancer can't happen to them because they [insert ANY risk reduction behavior that people confuse with primary prevention]. Still so much ignorance around lung cancer. Putting faces & stories helps humanize things (and raise $$) #lcsm T2
Janet Freeman-Daily @JFreemanDaily
We’ll shift to Topic T3 next … #LCSM
Lecia Sequist, MD, MPH @LeciaSequist
#LCSM Joining late - medical oncologist from Boston. Happy #LCAM
Rosemary Conway @SLPChitChat
#LCSM. T1- finding support was not easy. Finally, discovered the Lungevity forums.
Janet Freeman-Daily @JFreemanDaily
T3. What does lung cancer advocacy look like now? Do advocacy activities differ by type of stakeholders? Has public visibility of LC advocacy increased? #LCSM
Jill Barnholtz-Sloan, Ph.D. @NCIJBSloan
RT @NCICancerStats: Are there hot-spot regions for #LungCancer in your state? Look at the variation in Missouri counties. Visit the State Cancer Profiles website and select your home state to learn more https://t.co/TRmmwNZunY #LCSM https://t.co/ApVUyPkYpB
#LCSM Chat @lcsmchat
Hi @BillColona! Thanks for joining. #lcsm
#LCSM Chat @lcsmchat
RT @HenningWillers: @lcsmchat In and out while getting kids to bed🤗🤗🤗 ❤ what you are all doing & stories & passion #LCSM #lcam https://t.co/Px9sudoU6W
Henning Willers, MD @HenningWillers
@JFreemanDaily T2 well put👍 Progress has been incredible. But still not enough!!! #researchmatters #LCSM
Henning Willers, MD @HenningWillers
RT @JFreemanDaily: T2: T2: In past 10 years, research has given #lungcancer over a dozen new targeted therapies, a handful of immune checkpoint inhibitor therapies (AKA immunotherapy), improved radiation protocols, and LDCT screening for early detection. More healthy patients = more advocates. #LCSM
#LCSM Chat @lcsmchat
RT @aepriceny: @JFreemanDaily @lcsmchat #lcsm hi sorry I’m late. Joining to learn!
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@lcsmchat @JFreemanDaily Deana, is that you behind the #lcsm chat avatar tonight?! ❤️
#LCSM Chat @lcsmchat
RT @lgreco_ny: T2: T2: I also think a younger patient cohort has been beneficial to the movement. I think we may be less satisfied by the status quo. #lcsm
Preventive Medicine Bot @PreventiveBot
RT @JFreemanDaily: In 2011, just a few months after my diagnosis, the first targeted therapy for #lungcancer was approved by @US_FDA -- crizotinib for ALK+ NSCLC. Another targeted therapy was available, but not just for EGFR+ NSCLC. #LCSM
Preventive Medicine Bot @PreventiveBot
RT @JFreemanDaily: T2: T2: In past 10 years, research has given #lungcancer over a dozen new targeted therapies, a handful of immune checkpoint inhibitor therapies (AKA immunotherapy), improved radiation protocols, and LDCT screening for early detection. More healthy patients = more advocates. #LCSM
#LCSM Chat @lcsmchat
RT @acmoorephd: T2: T2: #research is extending and improving lives, giving patients the chance to engage more fully in #advocacy at all levels. More #survivors = more #advocates #lcsm
Michael Gieske, M.D. @mrgieske
Ky has the highest incidence and death rate from lung cancer; we are 5th from the bottom in 5-year surv.We battle with WV for highest smoking prevalence.BUT these stats will be changing with our work and the Ky Health Collab. Ky is #2 in the country for LC screening #lcsm chat
#LCSM Chat @lcsmchat
RT @RManochakian: #LungCancerAdvocacy helps support & promote all the ongoing research & science advancements to #ConquerLungCancer #lcsm & ensures Equity in health care delivery
Denise Cutlip @dennycee
T3: advocacy by patients according to their biomarker and raising seed monies to drive research. Amazing! #lcsm
#LCSM Chat @lcsmchat
RT @SLPChitChat: #LCSM I was diagnosed with NSCLC in Aug 2017. Stage IV. Involved with Lungevity and TWRP!
#LCSM Chat @lcsmchat
@SLPChitChat Hey Rosemary! Two great groups. #lcsm
#LCSM Chat @lcsmchat
RT @KimballKristen: T2 Patients living longer w/ better QOL and the knowledge we were so poorly funded that action was needed. I expect excitement over continued progress helped? Seeing more drugs approved, more trial opps? #LCSM
Henning Willers, MD @HenningWillers
@LeciaSequist Hi Lecia! #LCSM
#LCSM Chat @lcsmchat
RT @coffeemommy: @peggyddennis Sharing stories is HUGE. People assume cancer can't happen to them because they [insert ANY risk reduction behavior that people confuse with primary prevention]. Still so much ignorance around lung cancer. Putting faces & stories helps humanize things (and raise $$) #lcsm T2
#LCSM Chat @lcsmchat
RT @LeciaSequist: #LCSM Joining late - medical oncologist from Boston. Happy #LCAM
Laura Greco @lgreco_ny
t3: I think the number of people doing substantive advocacy activities has increased. For a time, I would know 100% of the people who had an article about them re lung cancer. That's changed. #lcsm
Janet Freeman-Daily @JFreemanDaily
T3. #Lungcancer advocacy has evolved considerably in the past 10 years. Many more patients and advocates tell their stories, raise money for research, and push for legislative change. #LCSM
#LCSM Chat @lcsmchat
@LeciaSequist Hello! So great to see you. #lcsm
#LCSM Chat @lcsmchat
RT @SLPChitChat: #LCSM. T1- finding support was not easy. Finally, discovered the Lungevity forums.
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3. What does lung cancer advocacy look like now? Do advocacy activities differ by type of stakeholders? Has public visibility of LC advocacy increased? #LCSM
#LCSM Chat @lcsmchat
RT @HenningWillers: @JFreemanDaily T2 well put👍 Progress has been incredible. But still not enough!!! #researchmatters #LCSM
#LCSM Chat @lcsmchat
RT @dennycee: T3: T3: advocacy by patients according to their biomarker and raising seed monies to drive research. Amazing! #lcsm
Laura Greco @lgreco_ny
t3: I also think the breadth of activities has changed. I still think we have a ways to go, and I still see us being used by so many as merely "window dressing," but, it is slowly getting better. #LCSM
#LCSM Chat @lcsmchat
RT @mrgieske: Ky has the highest incidence and death rate from lung cancer; we are 5th from the bottom in 5-year surv.We battle with WV for highest smoking prevalence.BUT these stats will be changing with our work and the Ky Health Collab. Ky is #2 in the country for LC screening #lcsm chat
Emily M ⚖️🎄 @7Willow33
#LCSM
Lecia Sequist, MD, MPH @LeciaSequist
T3. Science-focused advocacy (and training to get there) has made a HUGE difference in the way scientists approach reasearch. I can't overstate the positive impact of advocates' input 🙏 #LCSM
Janet Freeman-Daily @JFreemanDaily
T3. We now have many in-person support groups, as well as advocacy websites with tons of inspiring and informative pages, and SO many online platforms, social media accounts, and Facebook groups dedicated to lung cancer! (Social media was just gaining steam a decade ago) #LCSM
Henning Willers, MD @HenningWillers
RT @LeciaSequist: T3. Science-focused advocacy (and training to get there) has made a HUGE difference in the way scientists approach reasearch. I can't overstate the positive impact of advocates' input 🙏 #LCSM
#LCSM Chat @lcsmchat
@mrgieske Is @KentuckyLEADS helping change the situation? That’s an impressive screening stat. #lcsm
#LCSM Chat @lcsmchat
RT @lgreco_ny: t3: t3: I think the number of people doing substantive advocacy activities has increased. For a time, I would know 100% of the people who had an article about them re lung cancer. That's changed. #lcsm
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@lgreco_ny It’s getting better indeed @lgreco_ny and will keep getting better. It has to. Every advocacy effort is needed #LCSM
Dr. Amy C. Moore @acmoorephd
T3: We are seeing an explosion of targetable biomarkers and a corresponding increase in patient groups who are taking on education, awareness, #research and more! Visibility is increasing and the collective effort is changing the paradigm for #lungcancer #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3. #Lungcancer advocacy has evolved considerably in the past 10 years. Many more patients and advocates tell their stories, raise money for research, and push for legislative change. #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: t3: t3: I also think the breadth of activities has changed. I still think we have a ways to go, and I still see us being used by so many as merely "window dressing," but, it is slowly getting better. #LCSM
#LCSM Chat @lcsmchat
RT @7Willow33: #LCSM
Herbert Loong @herbloong
RT @APassaroMD:
#LCSM Chat @lcsmchat
@7Willow33 Hey Emily! #lcsm
#LCSM Chat @lcsmchat
RT @LeciaSequist: T3. Science-focused advocacy (and training to get there) has made a HUGE difference in the way scientists approach reasearch. I can't overstate the positive impact of advocates' input 🙏 #LCSM
Janet Freeman-Daily @JFreemanDaily
T3. Several organizations host in-person events (pre-pandemic) in which #lungcancer patients and caregivers can learn about their disease, meet researchers, and connect with others living with the same cancer. #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3. We now have many in-person support groups, as well as advocacy websites with tons of inspiring and informative pages, and SO many online platforms, social media accounts, and Facebook groups dedicated to lung cancer! (Social media was just gaining steam a decade ago) #LCSM
#LCSM Chat @lcsmchat
RT @acmoorephd: T3: T3: We are seeing an explosion of targetable biomarkers and a corresponding increase in patient groups who are taking on education, awareness, #research and more! Visibility is increasing and the collective effort is changing the paradigm for #lungcancer #lcsm
#LCSM Chat @lcsmchat
RT @RManochakian: @lgreco_ny It’s getting better indeed @lgreco_ny and will keep getting better. It has to. Every advocacy effort is needed #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3. Several organizations host in-person events (pre-pandemic) in which #lungcancer patients and caregivers can learn about their disease, meet researchers, and connect with others living with the same cancer. #LCSM
Laura Greco @lgreco_ny
t3: I do feel like the lung cancer patient community is maturing, from at first being just grateful to be able to "tell our story" to asking for, and sometimes getting, a seat at the table. #lcsm
#LCSM Chat @lcsmchat
Welcome @jfowlerpharmd! #lcsm
Henning Willers, MD @HenningWillers
@JFreemanDaily Can you share online forums, facebook, etc links? Many #lungcancer patients ask about online support and our hospital does not facilitate forums or similar (I believe Mayo does) #LCSM
Janet Freeman-Daily @JFreemanDaily
T3. @TheWRP4LC is bringing patients, caregivers, and advocates together for support and outreach to providers and researchers. #LCSM
Denise Cutlip @dennycee
T1: late due to traffic. Biggest early impression was Christine Newman et al rewriting the definition of oligometastatic disease and and the new definition approved/incorporated into standard of care #lcsm
Emily M ⚖️🎄 @7Willow33
RT @lgreco_ny: t3: t3: I do feel like the lung cancer patient community is maturing, from at first being just grateful to be able to "tell our story" to asking for, and sometimes getting, a seat at the table. #lcsm
#LCSM Chat @lcsmchat
RT @lgreco_ny: t3: t3: I do feel like the lung cancer patient community is maturing, from at first being just grateful to be able to "tell our story" to asking for, and sometimes getting, a seat at the table. #lcsm
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@acmoorephd Absolutely agree! And yet, still meeting people who have NO ACCESS to biomarker testing. While large academic medical centers are on it, 80% of people are treated in community settings. We MUST ensure every individual dx'd w/ lung cancer has access to biomarker testing #lcsm T3
#LCSM Chat @lcsmchat
RT @HenningWillers: @JFreemanDaily Can you share online forums, facebook, etc links? Many #lungcancer patients ask about online support and our hospital does not facilitate forums or similar (I believe Mayo does) #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3. @TheWRP4LC is bringing patients, caregivers, and advocates together for support and outreach to providers and researchers. #LCSM
Lung Cancer Sux @LungCancerSux
@JFreemanDaily Always energizing and great learning opportunities #LCSM
#LCSM Chat @lcsmchat
RT @dennycee: T1: T1: late due to traffic. Biggest early impression was Christine Newman et al rewriting the definition of oligometastatic disease and and the new definition approved/incorporated into standard of care #lcsm
#LCSM Chat @lcsmchat
RT @coffeemommy: @acmoorephd Absolutely agree! And yet, still meeting people who have NO ACCESS to biomarker testing. While large academic medical centers are on it, 80% of people are treated in community settings. We MUST ensure every individual dx'd w/ lung cancer has access to biomarker testing #lcsm T3
Dr. Amy C. Moore @acmoorephd
RT @LeciaSequist: T3. Science-focused advocacy (and training to get there) has made a HUGE difference in the way scientists approach reasearch. I can't overstate the positive impact of advocates' input 🙏 #LCSM
Janet Freeman-Daily @JFreemanDaily
T3. A growing number of #lungcancer patient advocates are evolving into patient research advocates (PRAs) who can provide patient perspective to researchers. The @IASLC STARS program began to train LC research advocates and just graduated its 3rd class of PRAs! #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T3. A growing number of #lungcancer patient advocates are evolving into patient research advocates (PRAs) who can provide patient perspective to researchers. The @IASLC STARS program began to train LC research advocates and just graduated its 3rd class of PRAs! #LCSM
Lecia Sequist, MD, MPH @LeciaSequist
@coffeemommy @acmoorephd Yes, this is a very real issue. Not only are there discrepant practices within the US, but also worldwide. We must do better #LCSM
#LCSM Chat @lcsmchat
RT @LeciaSequist: @coffeemommy @acmoorephd Yes, this is a very real issue. Not only are there discrepant practices within the US, but also worldwide. We must do better #LCSM
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@lgreco_ny THIS! And... (there's always an AND)... patients/advocates need a seat at the table and a microphone to go with the voice and perspective #lcsm T3
#LCSM Chat @lcsmchat
RT @coffeemommy: @lgreco_ny THIS! And... (there's always an AND)... patients/advocates need a seat at the table and a microphone to go with the voice and perspective #lcsm T3
#LCSM Chat @lcsmchat
Yes, @chrisdraft is force of nature. #lcsm
kristen kimball @KimballKristen
@JFreemanDaily T3 Advocacy groups make all of these actions so much more accessible to us all. @LUNGevity, @GO2Foundation, @TheWRP4LC, etc. etc. Grateful to them #LCSM
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@coffeemommy @lgreco_ny Patients & Advocates need a MAIN seat on the table. It’s all about the patients. #LCSM
Laura Greco @lgreco_ny
@RManochakian @coffeemommy Amen! #lcsm
Janet Freeman-Daily @JFreemanDaily
Topic T4 is on the way #LCSM
#LCSM Chat @lcsmchat
Hi @mlunsted! Thanks for joining. #lcsm
Janet Freeman-Daily @JFreemanDaily
T4. What changes would you like to see in lung cancer advocacy in the next 10 years, and how can the lung cancer community help make it happen? #LCSM
#LCSM Chat @lcsmchat
Hey @kRasKickers! #lcsm
Laura Greco @lgreco_ny
@MarksPhone Yes, but we are so more than our stories. We are the primary stakeholders in research outcomes. #LCSM
#LCSM Chat @lcsmchat
RT @KimballKristen: @JFreemanDaily T3 Advocacy groups make all of these actions so much more accessible to us all. @LUNGevity, @GO2Foundation, @TheWRP4LC, etc. etc. Grateful to them #LCSM
KRASKickers @KRASKickers
T3 That’s great!! #advocate growing & training thru @IASLC stars #Lcsm
#LCSM Chat @lcsmchat
RT @RManochakian: @coffeemommy @lgreco_ny Patients & Advocates need a MAIN seat on the table. It’s all about the patients. #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T4. What changes would you like to see in lung cancer advocacy in the next 10 years, and how can the lung cancer community help make it happen? #LCSM
kristen kimball @KimballKristen
@JFreemanDaily #caregivers now have more opportunities to gather and receive/provide support, too - even those of us in the "former" caregiver category. grateful. #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: @MarksPhone Yes, but we are so more than our stories. We are the primary stakeholders in research outcomes. #LCSM
#LCSM Chat @lcsmchat
RT @kRasKickers: T3 That’s great!! #advocate growing & training thru @IASLC stars #Lcsm
#LCSM Chat @lcsmchat
RT @KimballKristen: @JFreemanDaily #caregivers now have more opportunities to gather and receive/provide support, too - even those of us in the "former" caregiver category. grateful. #LCSM
Emily M ⚖️🎄 @7Willow33
RT @KimballKristen: @JFreemanDaily #caregivers now have more opportunities to gather and receive/provide support, too - even those of us in the "former" caregiver category. grateful. #LCSM
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@JFreemanDaily T4: More & more advocacy efforts & support to further promote & highlight the crucial importance of: 1)#LungCancer screening. 2)#Biomarker & NGS testing for all #LungCancer patients 3)#Access to clinical trials Among many others… #LCSM
Michael Gieske, M.D. @mrgieske
KY LEADS has been a big part of moving the dial in the state of Kentucky, and improving quality LCSPs. Many of the participants in KYLEADS program are also Among the health systems in the Kentucky Health Collaborative, our state based initiative. #lcsm chat
KRASKickers @KRASKickers
RT @JFreemanDaily: T3. We now have many in-person support groups, as well as advocacy websites with tons of inspiring and informative pages, and SO many online platforms, social media accounts, and Facebook groups dedicated to lung cancer! (Social media was just gaining steam a decade ago) #LCSM
Janet Freeman-Daily @JFreemanDaily
@HenningWillers We do have a list of useful links to different groups here: https://t.co/gn7LxTiJXx However, it's in need of updating! #LCSM
#LCSM Chat @lcsmchat
RT @RManochakian: @JFreemanDaily T4: More & more advocacy efforts & support to further promote & highlight the crucial importance of: 1)#LungCancer screening. 2)#Biomarker & NGS testing for all #LungCancer patients 3)#Access to clinical trials Among many others… #LCSM
#LCSM Chat @lcsmchat
RT @mrgieske: KY LEADS has been a big part of moving the dial in the state of Kentucky, and improving quality LCSPs. Many of the participants in KYLEADS program are also Among the health systems in the Kentucky Health Collaborative, our state based initiative. #lcsm chat
💙ana💙 @Jaywhite_era
RT @TakedaOncology: Did you know that NCCN Guidelines® recommend testing for mutations in eligible patients with metastatic non-small cell lung cancer (NSCLC) before starting first-line treatment? #lcsm
Dr. Amy C. Moore @acmoorephd
T4: I think we capture certain groups pretty well via social media. My concern is how the #pandemic has exacerbated #disparities, widened the digital divide and how do we reach the historically unreachable? We need new approaches perhaps. #lcsm
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@JFreemanDaily Would love to see the lung cancer advocacy community become more cohesive. Honestly saddened to see rifts in the community between smokers/non-smokers, some biomarker groups & competition btwn advocacy orgs. Feels akin to some of the breast cancer drama & is NOT helpful #lcsm T4
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @HenningWillers We do have a list of useful links to different groups here: @HenningWillers We do have a list of useful links to different groups here: https://t.co/gn7LxTiJXx However, it's in need of updating! #LCSM
#LCSM Chat @lcsmchat
RT @acmoorephd: T4: T4: I think we capture certain groups pretty well via social media. My concern is how the #pandemic has exacerbated #disparities, widened the digital divide and how do we reach the historically unreachable? We need new approaches perhaps. #lcsm
#LCSM Chat @lcsmchat
RT @coffeemommy: @JFreemanDaily Would love to see the lung cancer advocacy community become more cohesive. Honestly saddened to see rifts in the community between smokers/non-smokers, some biomarker groups & competition btwn advocacy orgs. Feels akin to some of the breast cancer drama & is NOT helpful #lcsm T4
Denise Cutlip @dennycee
L4: keeping our stories/faces in front of them, creating understanding and destroying stigma. #lcsm
Rami Manochakian MD, FASCO 🇺🇸🇸🇾CancerEducation @RManochakian
@LeciaSequist @JFreemanDaily @IASLC @EGFRSummit @EGFRResisters Couldn’t agree more @LeciaSequist #lcsm
kristen kimball @KimballKristen
@MichelleOtters2 So true! Thank you @chrisdraft <3 #LCSM
#LCSM Chat @lcsmchat
Wow! #lcsm
Michael Gieske, M.D. @mrgieske
National LCS rates of eligible population is sadly 6.5%; Ky is 17.7%. St. Elizabeth is 40% #lcsm chat
Laura Greco @lgreco_ny
@JFreemanDaily @HenningWillers I think it is important to talk with a person and get a handle on what exactly they are looking for. Some groups are more "touchy feely" than others, and many preference one over the other. #lcsm
#LCSM Chat @lcsmchat
RT @dennycee: L4: L4: keeping our stories/faces in front of them, creating understanding and destroying stigma. #lcsm
Laura Greco @lgreco_ny
@lcsmchat There is a pretty nifty Women's Lung Cancer Forum in Boston. #lcsm
Janet Freeman-Daily @JFreemanDaily
@acmoorephd Alas, social media has proven to be ineffective in reach diverse populations of patients. We do need better approaches for this. #LCSM
Mike Lunsted @mlunsted
@lcsmchat I appreciate it. Our story will be put out there more one day, just now it’s still a bit soon. Also, there needs to be more focus on #lcsm in Canada.
#LCSM Chat @lcsmchat
As a former caregiver, I understand this, Mark. xo #lcsm
kristen kimball @KimballKristen
@MarksPhone @MarksPhone yes, yes, yes. #LCSM
#LCSM Chat @lcsmchat
Increasing screening is an important part of advocacy. Congrats on your numbers. Very impressive. #lcsm
#LCSM Chat @lcsmchat
RT @lgreco_ny: @JFreemanDaily @HenningWillers I think it is important to talk with a person and get a handle on what exactly they are looking for. Some groups are more "touchy feely" than others, and many preference one over the other. #lcsm
Henning Willers, MD @HenningWillers
@JFreemanDaily T4 change away from too much reliance on randomized clinical trials and focus on DFS,OS, etc More patient centric designs and measures, endpoints. More real world evidence #LCSM
#LCSM Chat @lcsmchat
Do tell. Who/what/where? #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @acmoorephd Alas, social media has proven to be ineffective in reach diverse populations of patients. We do need better approaches for this. #LCSM
Emily M ⚖️🎄 @7Willow33
This 100%
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@acmoorephd @lcsmchat @JFreemanDaily 😉 I know you know that you answered your own question... Q: "How do we avoid duplication of efforts? Answer: Coordination and Collaboration ❤️ #lcsm
Laura Greco @lgreco_ny
@mrgieske Wow, that is REALLY good. #lcsm
#LCSM Chat @lcsmchat
Wait until the shock subsides. We get it. xo #lcsm
#LCSM Chat @lcsmchat
RT @HenningWillers: @JFreemanDaily T4 change away from too much reliance on randomized clinical trials and focus on DFS,OS, etc More patient centric designs and measures, endpoints. More real world evidence #LCSM
#LCSM Chat @lcsmchat
RT @coffeemommy: @acmoorephd @lcsmchat @JFreemanDaily 😉 I know you know that you answered your own question... Q: "How do we avoid duplication of efforts? Answer: Coordination and Collaboration ❤️ #lcsm
Lung Cancer Sux @LungCancerSux
T4: next on the agenda… expand screening and improve access to it #LCSM
Janet Freeman-Daily @JFreemanDaily
@HenningWillers T4: #Lungcancer patient groups and nonprofits are increasingly focused on generating real-world data and modernizing clinical trials. #LCSM
Henning Willers, MD @HenningWillers
@JFreemanDaily T4 Also we need strong advocacy to convince payers and hospitals to provide genotyping for ALL patients with #lung cancer, not just those with metastatic disease 🙏🙏🙏 #LCSM
Dr. Amy C. Moore @acmoorephd
Back to T3: In case you missed Upal Basu Roy's and my updated article on the biomarker patient groups in #lungcancer and how they are changing the face of #advocacy https://t.co/Wccf4QapN4 #lcsm
#LCSM Chat @lcsmchat
Yes! #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @acmoorephd: Back to T3: Back to T3: In case you missed Upal Basu Roy's and my updated article on the biomarker patient groups in #lungcancer and how they are changing the face of #advocacy https://t.co/Wccf4QapN4 #lcsm
Henning Willers, MD @HenningWillers
RT @JFreemanDaily: @HenningWillers We do have a list of useful links to different groups here: @HenningWillers We do have a list of useful links to different groups here: https://t.co/gn7LxTiJXx However, it's in need of updating! #LCSM
#LCSM Chat @lcsmchat
RT @LungCancerSux: T4: T4: next on the agenda… expand screening and improve access to it #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @HenningWillers T4: @HenningWillers T4: #Lungcancer patient groups and nonprofits are increasingly focused on generating real-world data and modernizing clinical trials. #LCSM
#LCSM Chat @lcsmchat
RT @HenningWillers: @JFreemanDaily T4 Also we need strong advocacy to convince payers and hospitals to provide genotyping for ALL patients with #lung cancer, not just those with metastatic disease 🙏🙏🙏 #LCSM
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@MarksPhone @lgreco_ny {{hug}} "And those stories help those in pain..." So much this. Stories can educate, they can validate, they can catalyze action... and they also can be part of the healing process. ❤️ #lcsm
#LCSM Chat @lcsmchat
RT @acmoorephd: Back to T3: Back to T3: In case you missed Upal Basu Roy's and my updated article on the biomarker patient groups in #lungcancer and how they are changing the face of #advocacy https://t.co/Wccf4QapN4 #lcsm
#LCSM Chat @lcsmchat
RT @coffeemommy: @MarksPhone @lgreco_ny {{hug}} "And those stories help those in pain..." So much this. Stories can educate, they can validate, they can catalyze action... and they also can be part of the healing process. ❤️ #lcsm
Janet Freeman-Daily @JFreemanDaily
We’re in our final minutes - closing thoughts? #LCSM
kristen kimball @KimballKristen
RT @LungCancerSux: T4: T4: next on the agenda… expand screening and improve access to it #LCSM
kristen kimball @KimballKristen
RT @HenningWillers: @JFreemanDaily T4 Also we need strong advocacy to convince payers and hospitals to provide genotyping for ALL patients with #lung cancer, not just those with metastatic disease 🙏🙏🙏 #LCSM
#LCSM Chat @lcsmchat
T4: How I wish we could harness the advocacy power of caregivers, both former and current. #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: We’re in our final minutes - closing thoughts? #LCSM
Janet Freeman-Daily @JFreemanDaily
Hope we get there someday! #LCSM
Christina Lizaso @btrfly12
RT @mtmdphd: Organizing Online Health Content: Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities [Jun 28, 2019] @subatomicdoc et al. #JCOCCI https://t.co/776r7qmxcY #ayacsm #bcsm #btsm #gyncsm #lcsm #mmsm #pancsm
kristen kimball @KimballKristen
Me too, @LungCancerFaces #LCSM
Laura Greco @lgreco_ny
t4: That means that advocacy organizations enter into meaningful relationships with people, even though they are stage IV and terminal. #LCSM
Laura Greco @lgreco_ny
T4: I'd LOVE to see patients truly be at the forefront of advocacy organization goals and directions as well as having a clear voice with research. Too often, if we are consulted at all, it is to "check a box". Nobody has more skin in the game than we do. #LCSM
Gina Hollenbeck @GinaHollenbeck
@HenningWillers @JFreemanDaily https://t.co/0R7GBT4m6h is a great resource to help all diagnosed with biomarkers get to their support/resource group. #LCSM
#LCSM Chat @lcsmchat
That’s exciting. Good luck! #lcsm https://t.co/wt1wdObZQl
Janet Freeman-Daily @JFreemanDaily
Thanks for joining #LCSM Chat in our discussion of “Lung Cancer Advocacy--What a Difference a Decade Makes!” Hope everyone enjoys the fall and upcoming holidays. Stay safe!
OncLive.com @OncLive
Best practices for managing treatment-related toxicities with frontline targeted therapy and immunotherapy is still being determined in patients with lung cancer @UPMCHillmanCC #lcsm #oncology https://t.co/IufgAMsQcX
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Hope we get there someday! #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: T4: T4: I'd LOVE to see patients truly be at the forefront of advocacy organization goals and directions as well as having a clear voice with research. Too often, if we are consulted at all, it is to "check a box". Nobody has more skin in the game than we do. #LCSM
#LCSM Chat @lcsmchat
RT @lgreco_ny: t4: t4: That means that advocacy organizations enter into meaningful relationships with people, even though they are stage IV and terminal. #LCSM
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy
@JFreemanDaily CT: I love you all. Thank you for devoting your time & your energy to changing the cancer narrative. Whether you're a patient, a carepartner, a researcher, a clinician, and interested supporter... you are an advocate and I'm grateful for you. ❤️ #lcsm #LCAM
Dr. Amy C. Moore @acmoorephd
Closing thoughts: #lungcancer #advocacy is powerful but we need to figure out how to channel our power in the most productive way to effect change and ensure that ALL patients benefit from advances in science and resources, regardless of where they are #lcsm
#LCSM Chat @lcsmchat
RT @GinaHollenbeck: @HenningWillers @JFreemanDaily https://t.co/0R7GBT4m6h is a great resource to help all diagnosed with biomarkers get to their support/resource group. #LCSM
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Thanks for joining #LCSM Chat in our discussion of “Lung Cancer Advocacy--What a Difference a Decade Makes!” Hope everyone enjoys the fall and upcoming holidays. Stay safe!
#LCSM Chat @lcsmchat
RT @coffeemommy: @JFreemanDaily CT: @JFreemanDaily CT: I love you all. Thank you for devoting your time & your energy to changing the cancer narrative. Whether you're a patient, a carepartner, a researcher, a clinician, and interested supporter... you are an advocate and I'm grateful for you. ❤️ #lcsm #LCAM
#LCSM Chat @lcsmchat
RT @acmoorephd: Closing thoughts: Closing thoughts: #lungcancer #advocacy is powerful but we need to figure out how to channel our power in the most productive way to effect change and ensure that ALL patients benefit from advances in science and resources, regardless of where they are #lcsm
ann price @aepriceny
@mlunsted @lcsmchat My friend is Editor of the Canadian National Observer. I’m going to hit her w some Lungevity stats #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @OncLive: Best practices for managing treatment-related toxicities with frontline targeted therapy and immunotherapy is still being determined in patients with lung cancer @UPMCHillmanCC #lcsm #oncology https://t.co/IufgAMsQcX
#LCSM Chat @lcsmchat
RT @aepriceny: @mlunsted @lcsmchat My friend is Editor of the Canadian National Observer. I’m going to hit her w some Lungevity stats #lcsm
Michael Gieske, M.D. @mrgieske
#lcsm chat We find one lung cancer for every 62 LDCT lung cancer screens done! HIGHLY impactful screen.
#LCSM Chat @lcsmchat
Thanks for moderating tonight @JFreemanDaily, and thanks to all our thoughtful participants. I love this community. #lcsm
Preventive Medicine Bot @PreventiveBot
RT @acmoorephd: Closing thoughts: Closing thoughts: #lungcancer #advocacy is powerful but we need to figure out how to channel our power in the most productive way to effect change and ensure that ALL patients benefit from advances in science and resources, regardless of where they are #lcsm
#LCSM Chat @lcsmchat
This. #lcsm
kristen kimball @KimballKristen
I, too, love this community. thank you everyone, and especially @JFreemanDaily and @LungCancerFaces for making these chats happen every month. #LCSM
#LCSM Chat @lcsmchat
RT @KimballKristen: I, too, love this community. thank you everyone, and especially @JFreemanDaily and @LungCancerFaces for making these chats happen every month. #LCSM
Lung Cancer Halflung (K Latzka) @LungCancerHalfL
Just missed it! ❤️ #LCSM
Laura Greco @lgreco_ny
RT @RManochakian: @coffeemommy @lgreco_ny Patients & Advocates need a MAIN seat on the table. It’s all about the patients. #LCSM
#LCSM content from Twitter.