#LCSM Transcript

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

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NCI Cancer Stats @NCICancerStats
#LungCancer causes more deaths than breast, prostate, and colorectal cancers combined: https://t.co/xvdcAAVggN #LCSM https://t.co/pKy6lOnfZi
H. Jack West, MD @JackWestMD
Hi folks, & welcome to #LCSM chat. I hope we have a lively discussion today. Let's start with introductions!
H. Jack West, MD @JackWestMD
Even if you don't want to say anything, pls type #LCSM, so we know you're here. We won't call on you (tho we'd love you to chime in). #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Hi folks, & welcome to #LCSM chat. I hope we have a lively discussion today. Let's start with introductions!
Karen Loss @cancertrek
Hi everyone. Karen here. #lcsm
Janet Freeman-Daily @JFreemanDaily
Evening #LCSM! Looking forward to an interesting conversation. #lcsm
Faces of Lung Cancer @LungCancerFaces
Deana in Los Angeles here. Looking forward to a very interesting chat today. #lcsm
Bob Steele @steele_bob
Good evening folks. Bob here in Greensboro, NC #lcsm
H. Jack West, MD @JackWestMD
I'm Jack West, Seattle-based med onc, major focus on #LungCancer, & moderating chat tonight. #lcsm
Faces of Lung Cancer @LungCancerFaces
@cancertrek Hi Karen! #lcsm
Janet Freeman-Daily @JFreemanDaily
Hi @cancertrek! #lcsm
Faces of Lung Cancer @LungCancerFaces
@steele_bob Hi Bob! How's your wife? #lcsm
Janet Freeman-Daily @JFreemanDaily
Welcome @steele_bob ! #lcsm
H. Jack West, MD @JackWestMD
Yes, I like to stir the pot... RT @JFreemanDaily: Evening #LCSM! Looking forward to an interesting conversation. #lcsm
Jill @jillfeldman4
Hi, Jill here. Getting snow that was promised so have to leave in 10mins to pick up carpool. Will try to catch up later #lcsm
Dr Riyaz Shah @DrRiyazShah
Awake here (just) #lcsm
Faces of Lung Cancer @LungCancerFaces
@jillfeldman4 Hey Jill! Great video with Ivy! Thank you. #lcsm
Faces of Lung Cancer @LungCancerFaces
@DrRiyazShah Welcome! #lcsm
Diane @diianeee
Hello! #lcsm
H. Jack West, MD @JackWestMD
Today's topic is on "Right to Try" laws, treatment off protocol w/treatments like CIMAVax, etc. Covering 6 Qs in next hr. #lcsm
Janet Freeman-Daily @JFreemanDaily
Hi @DrRiyazShah ! Sorry you can't stay @jillfeldman4--stay safe! #lcsm
Janet Freeman-Daily @JFreemanDaily
Nice to see you @diianeee #lcsm
LUNGevity Foundation @LUNGevity
Katie Brown Vice President of Survivorship here for @lungevity #lcsm
Anita Figueras @scifiknitter
Anita here, currently in Atlanta for the @freetobreathe Lung Cancer Leadership Conference. Should be an interesting discussion tonight! #lcsm
Bob Steele @steele_bob
@LungCancerFaces @steele_bob JoAnn is doing well. Still has a lot of pain, but it's expected to lessen in the next week or so. Thanks #lcsm
H. Jack West, MD @JackWestMD
You win bonus points! Thx for participating so late there. RT @DrRiyazShah: Awake here (just) #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: I'm Jack West, Seattle-based med onc, major focus on #LungCancer, & moderating chat tonight. #lcsm
Janet Freeman-Daily @JFreemanDaily
Katie! Nice to see the @LUNGevity handle in the chat. #lcsm
Jessie Hutchinson @jessiehutch15
RT @LUNGevity: Katie Brown Vice President of Survivorship here for @lungevity #lcsm
Leslie Trahan @lestrahan
Hi all! Leslie from Louisiana here. CG to husband with Stage IV NSCLC for almost 5 years #LCSM
H. Jack West, MD @JackWestMD
Great to have you here. Miss ya. RT @LUNGevity: Katie Brown Vice President of Survivorship here for @lungevity #lcsm
Janet Freeman-Daily @JFreemanDaily
Hi Leslie @lestrahan #lcsm
Faces of Lung Cancer @LungCancerFaces
@LUNGevity Hey, Katie! Great to see you. #lcsm
coristarlit @coristarlit
Cori here for my first #LCSM. Hi all!
LUNGevity Foundation @LUNGevity
RT @coristarlit: Cori here for my first #LCSM. Hi all!
Faces of Lung Cancer @LungCancerFaces
@coristarlit Welcome, Cori! We were all first-timers at one point. #lcsm
Janet Freeman-Daily @JFreemanDaily
Glad you joined us @coristarlit -- we're a friendly bunch #lcsm
Faces of Lung Cancer @LungCancerFaces
@diianeee Hey, you! #lcsm
H. Jack West, MD @JackWestMD
Great to have such a diverse crowd. We'll start with T1 in just a minute. #lcsm
Caregivers Resource @4_Caregivers
RT @LUNGevity: Katie Brown Vice President of Survivorship here for @lungevity #lcsm
Kristine Cherol @kscoon
Kristine is here- wife, caregiver and advocate to my late husband John #LCSM
Ian Pereira @IanJPereira
Hi #LCSM! Checking in for some of the chat tonight to learn from this great group.
Faces of Lung Cancer @LungCancerFaces
@lestrahan How's Mrs. Smokin' Hot today? #lcsm
LUNGevity Foundation @LUNGevity
RT @JackWestMD: Great to have such a diverse crowd. We'll start with T1 in just a minute. #lcsm
Janet Freeman-Daily @JFreemanDaily
Janet here, ROS1+ NSCLC first diagnosed 6,5 years ago. Big believer in evidence-based medicine and patient empowerment #lcsm
Faces of Lung Cancer @LungCancerFaces
@kscoon Hello, Kristine. Sending much love and respect your way, sweetie. #lcsm
Leslie Trahan @lestrahan
@coristarlit Welcome #LCSM
Faces of Lung Cancer @LungCancerFaces
@IanJPereira Hey stranger! #lcsm
Eden Lake @EdenLake
Eden here... nsclc s1 at diagnosis... s2 at surgery in 2016... immuno 2017... rescans/labs due now... crossing fingers all good... #lcsm
H. Jack West, MD @JackWestMD
T1) So we really need a nat'l “Right to Try” legislation, beyond today’s Expanded Use/Compassionate Use for investigational agents? #lcsm
Janet Freeman-Daily @JFreemanDaily
Welcome @kscoon!. Good to see you again @IanJPereira. #lcsm
Faces of Lung Cancer @LungCancerFaces
@EdenLake Best hopes, Eden. #lcsm
H. Jack West, MD @JackWestMD
That should have been "do we need..." #lcsm
LUNGevity Foundation @LUNGevity
A1: No, in fact it could reduce or threaten the protections afforded to patient through the current process #lcsm
Janet Freeman-Daily @JFreemanDaily
T1 Some people think Right to Try legislation will make experimental drugs more available. MT So we really need nat'l Right to Try? #lcsm
Dragon Boat CHS @DragonBoatCHS
RT @JackWestMD: I'm Jack West, Seattle-based med onc, major focus on #LungCancer, & moderating chat tonight. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Today's topic is on "Right to Try" laws, treatment off protocol w/treatments like CIMAVax, etc. Covering 6 Qs in next hr. #…
Karen Loss @cancertrek
T1: What do the lung cancer docs here think about this question? #lcsm
Janet Freeman-Daily @JFreemanDaily
@EdenLake Hope you get good results! #lcsm
Faces of Lung Cancer @LungCancerFaces
RT @JackWestMD: Today's topic is on "Right to Try" laws, treatment off protocol w/treatments like CIMAVax, etc. Covering 6 Qs in next hr. #…
H. Jack West, MD @JackWestMD
That's key argument by detractors, yes. MT @LUNGevity: A1: No, it could reduce/ threaten protectns afforded to pt thru current process #lcsm
Leslie Trahan @lestrahan
A1: only needed if it will help patients get these drugs more quickly. Seems to take forever to get drugs via compassionate use. #LCSM
#LCSM Chat @lcsmchat
RT @JackWestMD: T1) So we really need a nat'l “Right to Try” legislation, beyond today’s Expanded Use/Compassionate Use for investigational…
#LCSM Chat @lcsmchat
RT @JackWestMD: That should have been "do we need..." #lcsm
#LCSM Chat @lcsmchat
RT @LUNGevity: A1: No, in fact it could reduce or threaten the protections afforded to patient through the current process #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T1 Some people think Right to Try legislation will make experimental drugs more available. MT So we really need nat'l Ri…
#LCSM Chat @lcsmchat
RT @JackWestMD: That's key argument by detractors, yes. MT @LUNGevity: A1: No, it could reduce/ threaten protectns afforded to pt thru curr…
#LCSM Chat @lcsmchat
RT @lestrahan: A1: only needed if it will help patients get these drugs more quickly. Seems to take forever to get drugs via compassionate…
H. Jack West, MD @JackWestMD
T1) Right to try removes insurance coverage for complics of new treatments. Routine protocol safeguards not present w/Right to Try. #lcsm
Kristine Cherol @kscoon
A1- it’s my understanding- at least from secondhand experience that sometimes Compassionate Use can be a bit difficult. I’m for it if “right to try” makes it easier for access. https://t.co/ntDB6ZIJst
Janet Freeman-Daily @JFreemanDaily
T1 Right to try laws in the states haven't made much difference in patient access that I can see. Laws don't force pharma to make their drugs available for free to anyone who wants them. They just make docs less liable. #lcsm
H. Jack West, MD @JackWestMD
A1) Do ppl have experience w/compassionate use? Detractors of Right to Try say we already have good system. True? #lcsm
Karen Loss @cancertrek
T1: Might it cause more patients to ignore SOC treatments in favor of untried or unsafe methods touted through the grapevine? #lcsm
Janet Freeman-Daily @JFreemanDaily
@JackWestMD Yes, you do... Some pots need stirring now and then. ;) #LCSM
Kristine Cherol @kscoon
A1- it’s my understanding- at least from secondhand experience that sometimes Compassionate Use can be a bit difficult. I’m for it if “right to try” makes it easier for access. #LCSM https://t.co/ntDB6ZIJst
Denise Cutlip @dennycee
Hey all late, will be in and out. Great topic. #lcsm
Dr Riyaz Shah @DrRiyazShah
A1: I would worry that it might drive away innovators. Cost of manufacture of IMP’s may be high. You need to make enough to do the trials. What if “off study” patients soak up supply? #lcsm
Janet Freeman-Daily @JFreemanDaily
Hiya @dennycee #lcsm
Faces of Lung Cancer @LungCancerFaces
@dennycee We've been waiting for you. #lcsm
Anita Figueras @scifiknitter
T1 I wonder who would pay for the drugs and how that would happen. Expanded Access has a mechanism, I've seen no proposals on how Right to try would handle that. #lcsm
Karen Loss @cancertrek
T1: Does anyone feel like they have a good understanding of what Right to Try is all about? Please share. #lcsm
Anita Figueras @scifiknitter
RT @JFreemanDaily: T1 Right to try laws in the states haven't made much difference in patient access that I can see. Laws don't force pharm…
Geri Massa @GeriGerim13
Hi y'all 😊 I set my Alarm to remind me , i turned it off and still forgot .. #LCSM
#LCSM Chat @lcsmchat
RT @JackWestMD: T1) Right to try removes insurance coverage for complics of new treatments. Routine protocol safeguards not present w/Right…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T1 Right to try laws in the states haven't made much difference in patient access that I can see. Laws don't force pharm…
#LCSM Chat @lcsmchat
RT @JackWestMD: A1) Do ppl have experience w/compassionate use? Detractors of Right to Try say we already have good system. True? #lcsm
#LCSM Chat @lcsmchat
RT @cancertrek: T1: Might it cause more patients to ignore SOC treatments in favor of untried or unsafe methods touted through the grapevin…
Caregivers Resource @4_Caregivers
RT @LUNGevity: A1: No, in fact it could reduce or threaten the protections afforded to patient through the current process #lcsm
#LCSM Chat @lcsmchat
RT @kscoon: A1- it’s my understanding- at least from secondhand experience that sometimes Compassionate Use can be a bit difficult. I’m for…
H. Jack West, MD @JackWestMD
1 of my big concerns. MT @cancertrek: T1 Might it cause more pts to drop SOC Rx in favor of untried/unsafe ones touted thru grapevine? #lcsm
#LCSM Chat @lcsmchat
RT @DrRiyazShah: A1: I would worry that it might drive away innovators. Cost of manufacture of IMP’s may be high. You need to make enough t…
LCSC News @LCSCnews
RT @LUNGevity: A1: No, in fact it could reduce or threaten the protections afforded to patient through the current process #lcsm
#LCSM Chat @lcsmchat
RT @scifiknitter: T1 I wonder who would pay for the drugs and how that would happen. Expanded Access has a mechanism, I've seen no proposal…
LUNGevity Foundation @LUNGevity
RT @JackWestMD: That's key argument by detractors, yes. MT @LUNGevity: A1: No, it could reduce/ threaten protectns afforded to pt thru curr…
#LCSM Chat @lcsmchat
RT @cancertrek: T1: Does anyone feel like they have a good understanding of what Right to Try is all about? Please share. #lcsm
Anita Figueras @scifiknitter
RT @DrRiyazShah: A1: I would worry that it might drive away innovators. Cost of manufacture of IMP’s may be high. You need to make enough t…
Kimberley H Geissler @khgeissler
@JackWestMD #lcsm Lack of insurance seems like huge barrier. Incentives for insurers to say anything "new" a "complication" of tx. https://t.co/0nbSc6iiM5
H. Jack West, MD @JackWestMD
We'll move to T2 in another minute. All of the topics tie together anyway. #lcsm
Janet Freeman-Daily @JFreemanDaily
A1 Compassionate use takes long time and assistance to navigate, and sometimes drug still isn't accessible. Not sure Right to Try fixes the issues. #LCSM
Ian Pereira @IanJPereira
@LUNGevity @NEJM recently published a perspective suggesting #RTT weakens the @US_FDA's #PublicHealth mission: https://t.co/bZ77qcZ0xm #lcsm T1
Bob Steele @steele_bob
T1: Given the FDA's existing "compassionate use/expanded access" program & the added concerns, I'm leaning to the CON side. #lcsm
Anita Figueras @scifiknitter
RT @cancertrek: T1: Might it cause more patients to ignore SOC treatments in favor of untried or unsafe methods touted through the grapevin…
Janet Freeman-Daily @JFreemanDaily
@cancertrek I think Right To Try is intended to give very sick people better access to "hail Mary" drug treatments. Not sure it does. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: 1 of my big concerns. MT @cancertrek: T1 Might it cause more pts to drop SOC Rx in favor of untried/unsafe ones touted thru…
#LCSM Chat @lcsmchat
RT @khgeissler: @JackWestMD #lcsm Lack of insurance seems like huge barrier. Incentives for insurers to say anything "new" a "complication"…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: A1 Compassionate use takes long time and assistance to navigate, and sometimes drug still isn't accessible. Not sure Rig…
H. Jack West, MD @JackWestMD
T2) Is fed legislation for “right to try” a good choice to maximize pt options even if it lowers safety controls for these agents? #lcsm
#LCSM Chat @lcsmchat
RT @IanJPereira: @LUNGevity @NEJM recently published a perspective suggesting #RTT weakens the @US_FDA's #PublicHealth mission: https://t.c…
Kristine Cherol @kscoon
Isn’t one of the precautions of the legislation that patients must’ve tried SOC? It seems that this is being touted as more of an alt to clogged compassionate use process #lcsm https://t.co/GhDtmw6tvB
Laura Greco @lgreco_ny
Laura here #lcsm
#LCSM Chat @lcsmchat
RT @steele_bob: T1: Given the FDA's existing "compassionate use/expanded access" program & the added concerns, I'm leaning to the CON side.…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @cancertrek I think Right To Try is intended to give very sick people better access to "hail Mary" drug treatments. Not…
Dr Riyaz Shah @DrRiyazShah
T1: Different interests at play. Individual sufferer feels they should have a right to try anything. However society may feel a right to test thoroughly for the good of the many #lcsm
Anita Figueras @scifiknitter
RT @JFreemanDaily: @cancertrek I think Right To Try is intended to give very sick people better access to "hail Mary" drug treatments. Not…
Janet Freeman-Daily @JFreemanDaily
Anyone know if Right to Try legislation is binding on drug companies that are not based in the USA? #lcsm
Eden Lake @EdenLake
T1 of course, I dont have insurance covering anything, so insurance protections for complications are non-factor. Only if I changed residency to NY or NL I could get functional insurance, but not realistic now #lcsm
Karen Loss @cancertrek
T2: Is patient desire for what they've heard about Cimavax driving this? #lcsm
Janet Freeman-Daily @JFreemanDaily
Hey Laura! @lgreco_ny #lcsm
Karen Loss @cancertrek
T1: Driving it in the lung cancer world, at least? #lcsm
Dr Riyaz Shah @DrRiyazShah
RT @JackWestMD: 1 of my big concerns. MT @cancertrek: T1 Might it cause more pts to drop SOC Rx in favor of untried/unsafe ones touted thru…
H. Jack West, MD @JackWestMD
T2) essentially, is the most liberal plan the best idea, "come what may"? Should be be concerned abt harming pts w/less regulation? #lcsm
Eden Lake @EdenLake
Good question #lcsm @JFreemanDaily
#LCSM Chat @lcsmchat
RT @JackWestMD: T2) Is fed legislation for “right to try” a good choice to maximize pt options even if it lowers safety controls for these…
Ian Pereira @IanJPereira
@LUNGevity @NEJM @US_FDA I believe the FDA already approved most expanded access/compassionate use claims. What is the benefit of cutting it out via #RTT (& does it outweigh the risk)? T1 #lcsm
#LCSM Chat @lcsmchat
RT @kscoon: Isn’t one of the precautions of the legislation that patients must’ve tried SOC? It seems that this is being touted as more of…
#LCSM Chat @lcsmchat
RT @DrRiyazShah: T1: Different interests at play. Individual sufferer feels they should have a right to try anything. However society may f…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Anyone know if Right to Try legislation is binding on drug companies that are not based in the USA? #lcsm
#LCSM Chat @lcsmchat
RT @EdenLake: T1 of course, I dont have insurance covering anything, so insurance protections for complications are non-factor. Only if I c…
Janet Freeman-Daily @JFreemanDaily
T2: @cancertrek I think patients want to believe drugX may be their miracle, and they want to try it regardless of consequences. #lcsm
Eden Lake @EdenLake
RT @JFreemanDaily: Anyone know if Right to Try legislation is binding on drug companies that are not based in the USA? #lcsm
#LCSM Chat @lcsmchat
RT @cancertrek: T2: Is patient desire for what they've heard about Cimavax driving this? #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T2) essentially, is the most liberal plan the best idea, "come what may"? Should be be concerned abt harming pts w/less reg…
Karen Loss @cancertrek
T2: What would be any legal ramifications if patient has terrible reaction or quick death directly related to right to try drug? #lcsm
H. Jack West, MD @JackWestMD
It's not only drug, but an example of what ppl seek. RT @cancertrek: T2: Is pt desire for what they've heard re:Cimavax driving this? #lcsm
Leslie Trahan @lestrahan
RT @JFreemanDaily: @cancertrek I think Right To Try is intended to give very sick people better access to "hail Mary" drug treatments. Not…
Ian Pereira @IanJPereira
I believe the FDA already approves most expanded access/compassionate use claims. What is the benefit of cutting it out via #RTT (& does it outweigh the risk)? T1 #lcsm
LUNGevity Foundation @LUNGevity
A2:could weaken the very system that ensures safe therapies are avail to pts #lcsm
Laura Greco @lgreco_ny
@JFreemanDaily @cancertrek yes, because typically they have no other options. It's a hail Mary. #lcsm
Bob Tufts @TuftsB
@JFreemanDaily A1 #lcsm Better/more trial.access us the first step. Then streamlining expanded access. Have qualms about RTT but at the end we shouldconsider our one life, it is our body, our choice. @MLIWI
LUNGevity Foundation @LUNGevity
A2:cont... & undercuts the clinical trials process which benefits larger numbers of pts #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2: @cancertrek I think patients want to believe drugX may be their miracle, and they want to try it regardless of conse…
#LCSM Chat @lcsmchat
RT @cancertrek: T2: What would be any legal ramifications if patient has terrible reaction or quick death directly related to right to try…
Janet Freeman-Daily @JFreemanDaily
T2: @cancertrek Demand for Right to Try is driven not only CIMAVax, but for other treatments as well. Just check out online petitions #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: It's not only drug, but an example of what ppl seek. RT @cancertrek: T2: Is pt desire for what they've heard re:Cimavax dri…
Bob Steele @steele_bob
RT @LUNGevity: A2:cont... & undercuts the clinical trials process which benefits larger numbers of pts #lcsm
H. Jack West, MD @JackWestMD
None. That's the issue. MT @cancertrek: T2: What would be legal impact if pt has terrible rxn or quick death from right to try drug? #lcsm
#LCSM Chat @lcsmchat
RT @LUNGevity: A2:could weaken the very system that ensures safe therapies are avail to pts #lcsm
#LCSM Chat @lcsmchat
RT @lgreco_ny: @JFreemanDaily @cancertrek yes, because typically they have no other options. It's a hail Mary. #lcsm
#LCSM Chat @lcsmchat
RT @TuftsB: @JFreemanDaily A1 #lcsm Better/more trial.access us the first step. Then streamlining expanded access. Have qualms about RTT bu…
Ian Pereira @IanJPereira
@lestrahan I do wonder if we have data on how long it takes under the FDA (and how much shorter #RTT will be). #lcsm T1
#LCSM Chat @lcsmchat
RT @LUNGevity: A2:cont... & undercuts the clinical trials process which benefits larger numbers of pts #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2: @cancertrek Demand for Right to Try is driven not only CIMAVax, but for other treatments as well. Just check out on…
#LCSM Chat @lcsmchat
RT @JackWestMD: None. That's the issue. MT @cancertrek: T2: What would be legal impact if pt has terrible rxn or quick death from right to…
Ian Pereira @IanJPereira
RT @JackWestMD: T1) Right to try removes insurance coverage for complics of new treatments. Routine protocol safeguards not present w/Right…
Eden Lake @EdenLake
RT @JFreemanDaily: T2: @cancertrek Demand for Right to Try is driven not only CIMAVax, but for other treatments as well. Just check out on…
H. Jack West, MD @JackWestMD
Trials are another factor, coming up. RT @LUNGevity: A2:cont... & undercuts clin trials process which benefits larger numbers of pts #lcsm
Anita Figueras @scifiknitter
T2 Is Expanded Access/ Compassionate Use mandatory? I have heard drug companies do not have to offer their drugs if they don't want to. #lcsm
#LCSM Chat @lcsmchat
RT @IanJPereira: @lestrahan I do wonder if we have data on how long it takes under the FDA (and how much shorter #RTT will be). #lcsm T1
Janet Freeman-Daily @JFreemanDaily
T2: re legal ramifications, I think the whole point of Right to Try is that no one is held accountable if patient dies. #lcsm
Geri Massa @GeriGerim13
T2 I think a parent should habe an option, to discuss all treatment options #lcsm
Eden Lake @EdenLake
RT @IanJPereira: @lestrahan I do wonder if we have data on how long it takes under the FDA (and how much shorter #RTT will be). #lcsm T1
Kristine Cherol @kscoon
I guess that’s the whole problem-do we think they have the RIGHT to try that drug regardless of the consequences? I’d think with no options left- I’d want to try anything but I can’t say that without certainty. #LCSM https://t.co/p9WpKu5v1c
H. Jack West, MD @JackWestMD
RT @JFreemanDaily: T2: re legal ramifications, I think the whole point of Right to Try is that no one is held accountable if patient dies.…
Patty Watkins @Pattybeatslungc
RT @JackWestMD: It's not only drug, but an example of what ppl seek. RT @cancertrek: T2: Is pt desire for what they've heard re:Cimavax dri…
#LCSM Chat @lcsmchat
RT @scifiknitter: T2 Is Expanded Access/ Compassionate Use mandatory? I have heard drug companies do not have to offer their drugs if they…
Bob Steele @steele_bob
RT @JFreemanDaily: T2: re legal ramifications, I think the whole point of Right to Try is that no one is held accountable if patient dies.…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2: re legal ramifications, I think the whole point of Right to Try is that no one is held accountable if patient dies.…
#LCSM Chat @lcsmchat
RT @kscoon: I guess that’s the whole problem-do we think they have the RIGHT to try that drug regardless of the consequences? I’d think wit…
H. Jack West, MD @JackWestMD
We'll move to T3 in a moment. #lcsm
Patty Watkins @Pattybeatslungc
RT @JFreemanDaily: T2: re legal ramifications, I think the whole point of Right to Try is that no one is held accountable if patient dies.…
Leslie Trahan @lestrahan
RT @kscoon: I guess that’s the whole problem-do we think they have the RIGHT to try that drug regardless of the consequences? I’d think wit…
Annette McKinnon @anetto
Treatment selection of early stage non-small cell lung cancer: the role of the patient in clinical decision making https://t.co/m81SDCH5w3 #lcsm
Janet Freeman-Daily @JFreemanDaily
T2: Can RTT actually make a drug accessible if the drug company only has enough for their own clinical trials? Seems unlikely. #lcsm
Leslie Trahan @lestrahan
@IanJPereira That info would be nice to have #LCSM
Eden Lake @EdenLake
T2 another good question, but even generic approved drugs are exempt from legal recourse for bad effects @cancertrek #LCSM
Ian Pereira @IanJPereira
@JackWestMD Digging deeper, what are the financial complications for families (& the public) that pick up the #RTT tab? #lcsm T2
Leslie Trahan @lestrahan
RT @JFreemanDaily: T2: Can RTT actually make a drug accessible if the drug company only has enough for their own clinical trials? Seems unl…
Bob Tufts @TuftsB
@JFreemanDaily @cancertrek T2 #lcsm If doctors have said you will die with current treatments, from what are we protecting people? You wI'll die in a year, but wait for nextr phase to be done in 2 years?. As long as the process stays within FDA and snake oil salesman are punished....@MLIWI
Laura Greco @lgreco_ny
RT @kscoon: A1- it’s my understanding- at least from secondhand experience that sometimes Compassionate Use can be a bit difficult. I’m for…
Anita Figueras @scifiknitter
RT @JFreemanDaily: T2: Can RTT actually make a drug accessible if the drug company only has enough for their own clinical trials? Seems unl…
H. Jack West, MD @JackWestMD
T3) A key concern is eradication of doctor/insurance liability w/complicat'ns. Is risk of costs/loss of other rights a major downside? #lcsm
Patty Watkins @Pattybeatslungc
RT @kscoon: I guess that’s the whole problem-do we think they have the RIGHT to try that drug regardless of the consequences? I’d think wit…
Faces of Lung Cancer @LungCancerFaces
T2: Devil's advocate: In California, I have the right to legally take my own life if terminal. Shouldn't I have the #RighttoTry too? #lcsm
Kristine Cherol @kscoon
RT @TuftsB: @JFreemanDaily @cancertrek T2 #lcsm If doctors have said you will die with current treatments, from what are we protecting peop…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T2: Can RTT actually make a drug accessible if the drug company only has enough for their own clinical trials? Seems unl…
#LCSM Chat @lcsmchat
RT @EdenLake: T2 another good question, but even generic approved drugs are exempt from legal recourse for bad effects @cancertrek #LCSM
#LCSM Chat @lcsmchat
RT @IanJPereira: @JackWestMD Digging deeper, what are the financial complications for families (& the public) that pick up the #RTT tab? #…
#LCSM Chat @lcsmchat
RT @TuftsB: @JFreemanDaily @cancertrek T2 #lcsm If doctors have said you will die with current treatments, from what are we protecting peop…
#LCSM Chat @lcsmchat
RT @JackWestMD: T3) A key concern is eradication of doctor/insurance liability w/complicat'ns. Is risk of costs/loss of other rights a majo…
#LCSM Chat @lcsmchat
RT @LungCancerFaces: T2: Devil's advocate: In California, I have the right to legally take my own life if terminal. Shouldn't I have the #…
Geri Massa @GeriGerim13
Is anyone having connection problems? #lcsm
Bob Tufts @TuftsB
RT @JFreemanDaily: T2: Can RTT actually make a drug accessible if the drug company only has enough for their own clinical trials? Seems unl…
LUNGevity Foundation @LUNGevity
A3: No, it could leave already vulnerable pts w/ no retribution or financial safety net if there were adverse or addl' complications #lcsm
Eden Lake @EdenLake
RT @LungCancerFaces: T2: Devil's advocate: In California, I have the right to legally take my own life if terminal. Shouldn't I have the #…
#LCSM Chat @lcsmchat
RT @LUNGevity: A3: No, it could leave already vulnerable pts w/ no retribution or financial safety net if there were adverse or addl' compl…
Eden Lake @EdenLake
RT @TuftsB: @JFreemanDaily @cancertrek T2 #lcsm If doctors have said you will die with current treatments, from what are we protecting peop…
Laura Greco @lgreco_ny
RT @TuftsB: @JFreemanDaily @cancertrek T2 #lcsm If doctors have said you will die with current treatments, from what are we protecting peop…
H. Jack West, MD @JackWestMD
Make sure it's not related to length of tweet. Those >140 aren't on https://t.co/xanI5xUbv1 RT @GeriGerim13: Is anyone having connection problems? #lcsm
Laura Greco @lgreco_ny
RT @LUNGevity: A3: No, it could leave already vulnerable pts w/ no retribution or financial safety net if there were adverse or addl' compl…
Anita Figueras @scifiknitter
@LungCancerFaces Devil's devil's advocate: yes, as long as we figure out who is going to pay & how much. #lcsm
Faces of Lung Cancer @LungCancerFaces
Interesting question. #lcsm https://t.co/CPHTRlZGt9
Brendon Stiles @BrendonStilesMD
Arriving late! S #lcsm
Dr Riyaz Shah @DrRiyazShah
T3: I think RTT still means one should find a doc willing to supervise the therapy and deal with AE’s. Doc should manage pt as best they can but cannot be held responsible unless does something willfully negligent #lcsm
#LCSM Chat @lcsmchat
RT @scifiknitter: @LungCancerFaces Devil's devil's advocate: yes, as long as we figure out who is going to pay & how much. #lcsm
Leslie Trahan @lestrahan
RT @LungCancerFaces: T2: Devil's advocate: In California, I have the right to legally take my own life if terminal. Shouldn't I have the #…
Brendon Stiles @BrendonStilesMD
Hope all are well. Missing everyone! #lcsm
#LCSM Chat @lcsmchat
RT @LungCancerFaces: Interesting question. #lcsm https://t.co/CPHTRlZGt9
#LCSM Chat @lcsmchat
RT @DrRiyazShah: T3: I think RTT still means one should find a doc willing to supervise the therapy and deal with AE’s. Doc should manage p…
Anita Figueras @scifiknitter
RT @DrRiyazShah: T3: I think RTT still means one should find a doc willing to supervise the therapy and deal with AE’s. Doc should manage p…
Bob Tufts @TuftsB
@JFreemanDaily We need an expansion of people getting in trials. Only 3% of patients are in trials is what I have heard. This must change. Make easier, increase access, pay more patient expenses, involve patients in trial design. #lcsm @MLIWI
Faces of Lung Cancer @LungCancerFaces
@BrendonStilesMD We miss you, too! #lcsm
Leslie Trahan @lestrahan
@LungCancerFaces Ummm, yes! #lcsm
H. Jack West, MD @JackWestMD
@TuftsB @JFreemanDaily @cancertrek What if major toxicity occurs but not reported bec not required w/#RightToTry ? Could harm many. #lcsm
Leslie Trahan @lestrahan
RT @JackWestMD: T3) A key concern is eradication of doctor/insurance liability w/complicat'ns. Is risk of costs/loss of other rights a majo…
Ian Pereira @IanJPereira
@JFreemanDaily Perhaps #RTT is designed to make drugs accessible to those who can afford them, but has a risk of making them accessible to those who cannot. #lcsm T2 #supply/demand
Brendon Stiles @BrendonStilesMD
Critical topic for cancer patients. #lcsm
H. Jack West, MD @JackWestMD
Great to have you here. RT @BrendonStilesMD: Hope all are well. Missing everyone! #lcsm
Geri Massa @GeriGerim13
T2 My grandfather always said, Dr Kevorkian was just way ahead of his time, this was in the 80’s I think you should have that right to chose #lcsm
Leslie Trahan @lestrahan
A3: the financial side worries me. #LCSM
Kristine Cherol @kscoon
@lgreco_ny @LungCancerFaces Nope! No sense here! I’m all for easier access for last resort. #lcsm
Karen Loss @cancertrek
T3: So Brendon...what do you think about RTT? Weigh in. :) #lcsm
#LCSM Chat @lcsmchat
RT @TuftsB: @JFreemanDaily We need an expansion of people getting in trials. Only 3% of patients are in trials is what I have heard. This m…
Dr Riyaz Shah @DrRiyazShah
RT @JackWestMD: @TuftsB @JFreemanDaily @cancertrek What if major toxicity occurs but not reported bec not required w/#RightToTry ? Could ha…
#LCSM Chat @lcsmchat
RT @JackWestMD: @TuftsB @JFreemanDaily @cancertrek What if major toxicity occurs but not reported bec not required w/#RightToTry ? Could ha…
#LCSM Chat @lcsmchat
RT @IanJPereira: @JFreemanDaily Perhaps #RTT is designed to make drugs accessible to those who can afford them, but has a risk of making th…
Ian Pereira @IanJPereira
@JackWestMD @TuftsB @JFreemanDaily @cancertrek I have wondered about this. If through the FDA outcomes & complications are recorded? Not so with #RTT? #lcsm T3
#LCSM Chat @lcsmchat
RT @GeriGerim13: T2 My grandfather always said, Dr Kevorkian was just way ahead of his time, this was in the 80’s I think you should have t…
#LCSM Chat @lcsmchat
RT @lestrahan: A3: the financial side worries me. #LCSM
Janet Freeman-Daily @JFreemanDaily
@TuftsB @cancertrek @MLIWI @TuftB "...as long as snake oil salesman are punished"--I think that is one of the huge issues. If anyone can try anything, from any seller, who insures patients have accurate data with which to make the best treatment choice? #LCSM
#LCSM Chat @lcsmchat
RT @kscoon: @lgreco_ny @LungCancerFaces Nope! No sense here! I’m all for easier access for last resort. #lcsm
Eden Lake @EdenLake
T3 with the progressive gutting of ACA, these are going to be progressively less of an issue. Fewer and fewer can get/afford functional insurance anyway #lcsm
#LCSM Chat @lcsmchat
RT @IanJPereira: @JackWestMD @TuftsB @JFreemanDaily @cancertrek I have wondered about this. If through the FDA outcomes & complications are…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @TuftsB @cancertrek @MLIWI @TuftB "...as long as snake oil salesman are punished"--I think that is one of the huge issue…
#LCSM Chat @lcsmchat
RT @EdenLake: T3 with the progressive gutting of ACA, these are going to be progressively less of an issue. Fewer and fewer can get/afford…
Laura Greco @lgreco_ny
A3: does anyone find the position against RTT extremely paternalistic? #lcsm
H. Jack West, MD @JackWestMD
Complics requiring ICU stay could bankrupt person/family if insurance doesn't cover. RT @lestrahan: A3: the financial side worries me. #LCSM
Anita Figueras @scifiknitter
RT @JFreemanDaily: @TuftsB @cancertrek @MLIWI @TuftB "...as long as snake oil salesman are punished"--I think that is one of the huge issue…
Eden Lake @EdenLake
::::waves::: hope you are as well @BrendonStilesMD #lcsm
Eden Lake @EdenLake
I think reporting ought be a requirement, even if liability is waived @JackWestMD @TuftsB @JFreemanDaily @cancertrek #lcsm
#LCSM Chat @lcsmchat
@LungCancerFaces Hey, Patty! I see you. Remember to include #LCSM in your tweets. xo
H. Jack West, MD @JackWestMD
Plenty of pts & pt groups find harms riskier than benefits. MT @lgreco_ny: A3: does anyone find posit'n against RTT vy paternalistic? #lcsm
Janet Freeman-Daily @JFreemanDaily
This is a tough chat to keep up with -- each comment has deeper implications that get me thinking #lcsm
Leslie Trahan @lestrahan
RT @EdenLake: T3 with the progressive gutting of ACA, these are going to be progressively less of an issue. Fewer and fewer can get/afford…
Laura Greco @lgreco_ny
RT @JackWestMD: Complics requiring ICU stay could bankrupt person/family if insurance doesn't cover. RT @lestrahan: A3: the financial side…
Bob Tufts @TuftsB
@JackWestMD @JFreemanDaily @cancertrek Which is why pharmacy doesn't want this. Drugs just starting Phase II may get wiped out. But better then than the 30% recalled in post Phase III! Frankly, I want transparency in this matter. I am in a Phase 1B with dosage and with or without dex FYI. #lcsm
Bob Steele @steele_bob
RT @JFreemanDaily: This is a tough chat to keep up with -- each comment has deeper implications that get me thinking #lcsm
H. Jack West, MD @JackWestMD
T4) Should we be concerned that “Right to Try” will short circuiit clinical trial enrollment & development of investigational agents? #lcsm
#LCSM Chat @lcsmchat
RT @lgreco_ny: A3: does anyone find the position against RTT extremely paternalistic? #lcsm
Brendon Stiles @BrendonStilesMD
@cancertrek Ha! Complicated topic. Backtracking on conversation and trying to figure out what has been said. Although I am generally supportive, I think explaining risk in general (medical and financial) is not something doctors do well. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Plenty of pts & pt groups find harms riskier than benefits. MT @lgreco_ny: A3: does anyone find posit'n against RTT vy pate…
#LCSM Chat @lcsmchat
RT @JackWestMD: Complics requiring ICU stay could bankrupt person/family if insurance doesn't cover. RT @lestrahan: A3: the financial side…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: This is a tough chat to keep up with -- each comment has deeper implications that get me thinking #lcsm
#LCSM Chat @lcsmchat
RT @TuftsB: @JackWestMD @JFreemanDaily @cancertrek Which is why pharmacy doesn't want this. Drugs just starting Phase II may get wiped out.…
#LCSM Chat @lcsmchat
RT @JackWestMD: T4) Should we be concerned that “Right to Try” will short circuiit clinical trial enrollment & development of investigation…
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: @cancertrek Ha! Complicated topic. Backtracking on conversation and trying to figure out what has been said. Althou…
Bob Steele @steele_bob
@JFreemanDaily Yep. It's why I'm quietly reading and pondering. Have changed mind 3 times already. lol #lcsm
Dr Riyaz Shah @DrRiyazShah
@lgreco_ny As an oncologist I see both sides to this. It’s really tricky. We feel bad that vulnerable pts and care givers could be exploited. However, also see the patients side (everyday). That’s why this needs to be removed from us and needs legislation #LCSM
Anita Figueras @scifiknitter
RT @BrendonStilesMD: @cancertrek Ha! Complicated topic. Backtracking on conversation and trying to figure out what has been said. Althou…
Eden Lake @EdenLake
To a point, yes I agree with that @lgreco_ny the same as with attempts to deny parents cannabis for kids seizures etc. Its not just LC or cancer period. So many others are affected #lcsm
#LCSM Chat @lcsmchat
RT @steele_bob: @JFreemanDaily Yep. It's why I'm quietly reading and pondering. Have changed mind 3 times already. lol #lcsm
Brendon Stiles @BrendonStilesMD
T4. @JackWestMD Without a doubt. It is important to establish who and when to try in rigorous studies or we will never make progress on the whole. #lcsm
Eden Lake @EdenLake
RT @lgreco_ny: A3: does anyone find the position against RTT extremely paternalistic? #lcsm
H. Jack West, MD @JackWestMD
Should I come up w/something less thought provoking next time? MT @JFreemanDaily: tough chat to keep up w/: comments gets me thinking #lcsm
Ian Pereira @IanJPereira
@LungCancerFaces We have similar #eol legislation in Canada. However, I imagine the financial toxicity for #AssistedDying is less than for many experimental drugs through #RTT. #lcsm T2
Karen Loss @cancertrek
T4: Clinical trial participation has much bigger problems than RTT. #lcsm
Kristine Cherol @kscoon
I’m sure patient groups will find that risks might outway, but I’m wondering how many actual pts would say no to something if last possible treatment option. My husband was asking about a liver transplant. He would’ve done anything to live. #lcsm https://t.co/eO1VVHuaNI
#LCSM Chat @lcsmchat
RT @DrRiyazShah: @lgreco_ny As an oncologist I see both sides to this. It’s really tricky. We feel bad that vulnerable pts and care givers…
#LCSM Chat @lcsmchat
RT @EdenLake: To a point, yes I agree with that @lgreco_ny the same as with attempts to deny parents cannabis for kids seizures etc. Its no…
Brendon Stiles @BrendonStilesMD
@JackWestMD @JFreemanDaily Definitely not. The hard questions are always more interesting. #lcsm
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: T4. @JackWestMD Without a doubt. It is important to establish who and when to try in rigorous studies or we will nev…
Janet Freeman-Daily @JFreemanDaily
@JackWestMD No, I like thought provoking! Just don't have as many brain cells on duty after, say, 6 PM. They demand time off. #lcsm
H. Jack West, MD @JackWestMD
T4) Is concern that #RightToTry will undermine clinical trials a valid one? Is short term focus hurting long term gains? #lcsm
#LCSM Chat @lcsmchat
RT @IanJPereira: @LungCancerFaces We have similar #eol legislation in Canada. However, I imagine the financial toxicity for #AssistedDying
#LCSM Chat @lcsmchat
RT @cancertrek: T4: Clinical trial participation has much bigger problems than RTT. #lcsm
#LCSM Chat @lcsmchat
RT @kscoon: I’m sure patient groups will find that risks might outway, but I’m wondering how many actual pts would say no to something if l…
#LCSM Chat @lcsmchat
RT @JackWestMD: T4) Is concern that #RightToTry will undermine clinical trials a valid one? Is short term focus hurting long term gains? #l
H. Jack West, MD @JackWestMD
Pls elaborate... RT @cancertrek: T4: Clinical trial participation has much bigger problems than RTT. #lcsm
Laura Greco @lgreco_ny
RT @JackWestMD: Plenty of pts & pt groups find harms riskier than benefits. MT @lgreco_ny: A3: does anyone find posit'n against RTT vy pate…
LUNGevity Foundation @LUNGevity
A4:Yes,RightToTry legislation could divert pts fr clinical trials there by slowing drug regulatory approvals which affects a much larger number of pts #lcsm
Brendon Stiles @BrendonStilesMD
@lgreco_ny @cancertrek I totally agree. Doctors need better training for this and similar discussions. Ever more critical in the age of shared decision making. #LCSM
Leslie Trahan @lestrahan
@lgreco_ny @JackWestMD I would give everything I own plus some if it could save/prolong Andy’s life. #lcsm
Jessie Hutchinson @jessiehutch15
RT @LUNGevity: A4:Yes,RightToTry legislation could divert pts fr clinical trials there by slowing drug regulatory approvals which affects a…
Bob Tufts @TuftsB
@JFreemanDaily I was told I would die in a year. Used med every oncologist knew worked but was technically off labei. Am here 9 yesrs later. Would I I have taken a risky Phase I drug ar that time weighing possibility versus certain death? Yes. #lcsm
Karen Loss @cancertrek
T4: Trial requirements are often so stringent that people who should qualify can't get into them at all. #lcsm
#LCSM Chat @lcsmchat
RT @LUNGevity: A4:Yes,RightToTry legislation could divert pts fr clinical trials there by slowing drug regulatory approvals which affects a…
#LCSM Chat @lcsmchat
RT @lestrahan: @lgreco_ny @JackWestMD I would give everything I own plus some if it could save/prolong Andy’s life. #lcsm
Dr Riyaz Shah @DrRiyazShah
A4: totally. It’s inevitable. There’s only so many patients who are eligible. Will drag trials out of US and they will get done in EU/Asia. #lcsm
Kristine Cherol @kscoon
A4- why can’t we find middle ground? Have RTT patients report side effects to clinical trial docs? Maybe not for papers but for greater good? #lcsm https://t.co/Pyfe9V2ifw
Janet Freeman-Daily @JFreemanDaily
T4) I don't think Right to Try undermines clinical trials any more than the hype about "cures" does (i.e., patients demand immunotherapy even if it's not best match for their cancer). However, might cause patient to choose less effective treatment. #lcsm
Brendon Stiles @BrendonStilesMD
@cancertrek This is true. Expansion to real world patients then often leads to disappointing results. #lcsm
Bob Steele @steele_bob
RT @lestrahan: @lgreco_ny @JackWestMD I would give everything I own plus some if it could save/prolong Andy’s life. #lcsm
H. Jack West, MD @JackWestMD
Compassionate use usually more liberal, but true. RT @cancertrek: T4: Trial reqs often so stringent ppl who shd qualify can't get in. #lcsm
Faces of Lung Cancer @LungCancerFaces
@lestrahan That's the issue, isn't it? What if you can't get into that next trial? Hail Mary time, right? @lgreco_ny @JackWestMD #lcsm
#LCSM Chat @lcsmchat
RT @TuftsB: @JFreemanDaily I was told I would die in a year. Used med every oncologist knew worked but was technically off labei. Am here…
#LCSM Chat @lcsmchat
RT @cancertrek: T4: Trial requirements are often so stringent that people who should qualify can't get into them at all. #lcsm
#LCSM Chat @lcsmchat
RT @DrRiyazShah: A4: totally. It’s inevitable. There’s only so many patients who are eligible. Will drag trials out of US and they will get…
Janet Freeman-Daily @JFreemanDaily
@TuftsB I agree making off-label drugs more available to patients who have genomic match would be a good thing, as long as results are captured so we can see if it works for a large percentage of patients. Not quite same as RTT. #lcsm
#LCSM Chat @lcsmchat
RT @kscoon: A4- why can’t we find middle ground? Have RTT patients report side effects to clinical trial docs? Maybe not for papers but for…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T4) I don't think Right to Try undermines clinical trials any more than the hype about "cures" does (i.e., patients dema…
#LCSM Chat @lcsmchat
RT @JackWestMD: Compassionate use usually more liberal, but true. RT @cancertrek: T4: Trial reqs often so stringent ppl who shd qualify can…
Ian Pereira @IanJPereira
@lgreco_ny @LungCancerFaces Perhaps such access endangers #PublicHealth/societal safety? Healthcare is an irrational good. I wonder if many families would go all in for the wants of one at cost to the many who cannot afford it. #lcsm T2
#LCSM Chat @lcsmchat
RT @LungCancerFaces: @lestrahan That's the issue, isn't it? What if you can't get into that next trial? Hail Mary time, right? @lgreco_ny @…
Eden Lake @EdenLake
RT @cancertrek: T4: Trial requirements are often so stringent that people who should qualify can't get into them at all. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @TuftsB I agree making off-label drugs more available to patients who have genomic match would be a good thing, as long…
Jeff Julian @CoachJeffJulian
@JackWestMD Hi all, infrequent participant here, stage 4, 3 yr IO survivor. Wouldn’t people still pick trial route for cost and safety reasons? Way too deep for me to have strong opinion right now and plenty of concerns. We seem to be talking last shot type situations, past trials then #lcsm
Leslie Trahan @lestrahan
@LungCancerFaces @lgreco_ny @JackWestMD Yes! I will stop at nothing. Give me the Hail Mary please!!!! #lcsm
#LCSM Chat @lcsmchat
RT @IanJPereira: @lgreco_ny @LungCancerFaces Perhaps such access endangers #PublicHealth/societal safety? Healthcare is an irrational good.…
Dr Riyaz Shah @DrRiyazShah
@cancertrek Real important issue. ASCO looking at this. Lots of silly eligibility criteria will get amended hopefully. #lcsm
H. Jack West, MD @JackWestMD
Next Q in a moment. #lcsm
Sarah Jeffords @sarahkilgore23
Hopefully I’ll be starting a trial for SCLC called BiTE at @EmoryUniversity #lcsm
Enlightening Results @GraceCordovano
Hi #lcsm! Grace, private cancer patient advocate joining in late from NJ.
Janet Freeman-Daily @JFreemanDaily
Yet how would a caregiver feel if they helped their patient get a Right to Try drug that bought a month, followed by uncontrolled pain and a gruesome death? #LCSM
Laura Greco @lgreco_ny
RT @EdenLake: To a point, yes I agree with that @lgreco_ny the same as with attempts to deny parents cannabis for kids seizures etc. Its no…
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: @cancertrek This is true. Expansion to real world patients then often leads to disappointing results. #lcsm
H. Jack West, MD @JackWestMD
Need to eliminate ritual exclusions. MT @DrRiyazShah: @cancertrek important. ASCO looking at this re: silly eligibility criteria. #lcsm
Leslie Trahan @lestrahan
@LungCancerFaces @lgreco_ny @JackWestMD @trahan31 has always had difficulty qualifying for trials since his progression is always CNS or bones. So frustrating. #lcsm
#LCSM Chat @lcsmchat
RT @CoachJeffJulian: @JackWestMD Hi all, infrequent participant here, stage 4, 3 yr IO survivor. Wouldn’t people still pick trial route for…
Janet Freeman-Daily @JFreemanDaily
If a patient had complications resulting from a Right to Try drug, might their insurance company refuse to cover cost of treating those complications? #LCSM
H. Jack West, MD @JackWestMD
T5) Are pts who seek CIMAVax in Cuba informed & choosing well, even if against doc’s advice? Do they risk missing better treatment? #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Yet how would a caregiver feel if they helped their patient get a Right to Try drug that bought a month, followed by unc…
#LCSM Chat @lcsmchat
RT @JackWestMD: Need to eliminate ritual exclusions. MT @DrRiyazShah: @cancertrek important. ASCO looking at this re: silly eligibility cri…
#LCSM Chat @lcsmchat
RT @lestrahan: @LungCancerFaces @lgreco_ny @JackWestMD @trahan31 has always had difficulty qualifying for trials since his progression is a…
#LCSM Chat @lcsmchat
RT @JFreemanDaily: If a patient had complications resulting from a Right to Try drug, might their insurance company refuse to cover cost of…
#LCSM Chat @lcsmchat
RT @JackWestMD: T5) Are pts who seek CIMAVax in Cuba informed & choosing well, even if against doc’s advice? Do they risk missing better tr…
Sarah Jeffords @sarahkilgore23
@EmoryUniversity #lcsm https://t.co/5TE6Ptvi5W
Bob Tufts @TuftsB
@DrRiyazShah @JackWestMD @JFreemanDaily @cancertrek #lcsm The need for transparency and information flow in every sector of healthcare is paramount and would serve patients well.
LUNGevity Foundation @LUNGevity
A5: We do not have enough info about the efficacy of CimVAX #lcsm
Enlightening Results @GraceCordovano
#LCSM #RightToTry https://t.co/fhkIqL9jF5
Kimberley H Geissler @khgeissler
@JackWestMD ICU stay might bankrupt wealthy families. Any hospitalization bankrupt many/most families. What % of LC deaths are due to "complications" vs. cancer itself? #lcsm https://t.co/gAjvQGHdfv
Janet Freeman-Daily @JFreemanDaily
T5) Some who seek CIMAVax are stable following successful tx for Stage 3, and are not offered other options to prevent progression. #lcsm
Karen Loss @cancertrek
T5: From what I've read about Cimavax, I think they ARE likely grasping at straws to their own financial detriment. #lcsm
Dr Riyaz Shah @DrRiyazShah
@kscoon Umbrella/Basket trials often touted as a middle ground eg MATRIX. #lcsm
#LCSM Chat @lcsmchat
RT @TuftsB: @DrRiyazShah @JackWestMD @JFreemanDaily @cancertrek #lcsm The need for transparency and information flow in every sector of hea…
LUNGevity Foundation @LUNGevity
A5 cont' ..Roswell Park Cancer Institute is currently conducting a trial. #lcsm
#LCSM Chat @lcsmchat
RT @LUNGevity: A5: We do not have enough info about the efficacy of CimVAX #lcsm
#LCSM Chat @lcsmchat
RT @khgeissler: @JackWestMD ICU stay might bankrupt wealthy families. Any hospitalization bankrupt many/most families. What % of LC deaths…
H. Jack West, MD @JackWestMD
T5) My concern is that excitement re: CIMAVax is driven more by hype than data. Evidence is marginal w/CIMAVax up to now... #lcsm
LUNGevity Foundation @LUNGevity
A5: cont' Till the trial is complete, pts should decide their treatment after discussion w/their treating oncologist #lcsm
H. Jack West, MD @JackWestMD
RT @LUNGevity: A5: cont' Till the trial is complete, pts should decide their treatment after discussion w/their treating oncologist #lcsm
Laura Greco @lgreco_ny
RT @lestrahan: @LungCancerFaces @lgreco_ny @JackWestMD Yes! I will stop at nothing. Give me the Hail Mary please!!!! #lcsm
Brendon Stiles @BrendonStilesMD
T5. No. Yes. #lcsm
Karen Loss @cancertrek
RT @JackWestMD: T5) My concern is that excitement re: CIMAVax is driven more by hype than data. Evidence is marginal w/CIMAVax up to now...…
Kristine Cherol @kscoon
@JFreemanDaily I would feel that we tried everything. Just like we did when we contacted Ross Camidge and Lecia Sequist. If John wanted to try everything- I would help him. If he didnt- I would’ve stopped. Always his choice. https://t.co/8NkLiTqWW2
Eden Lake @EdenLake
Well @cancertrek cimavax $12,500 cost, compared with EVERYTHING else at $19-20k+ for only 6 weeks... so financial detriment argument is a bit skewed #lcsm
Ian Pereira @IanJPereira
@JFreemanDaily I wonder if #RTT will transfer the onus of education from the government to patients & providers. Messy for systems not designed for it. #lcsm T4 #healthliteracy
Enlightening Results @GraceCordovano
@cancertrek A succinct overview on a single slide would be helpful. So many facets. #righttotry #lcsm
Janet Freeman-Daily @JFreemanDaily
A lot of my tweets are not showing up in the chat via https://t.co/A2M7gY7Hvl ... **sigh** #lcsm
H. Jack West, MD @JackWestMD
T5) I'm completely behind studying these options in trials, e.g. CIMAVax study at Roswell Park. Just not flying to Cuba based on hype. #lcsm
Bob Tufts @TuftsB
RT @JackWestMD: T1) Right to try removes insurance coverage for complics of new treatments. Routine protocol safeguards not present w/Right…
Brendon Stiles @BrendonStilesMD
@JFreemanDaily Me too! #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: T5) Some who seek CIMAVax are stable following successful tx for Stage 3, and are not offered other options to prevent p…
#LCSM Chat @lcsmchat
RT @cancertrek: T5: From what I've read about Cimavax, I think they ARE likely grasping at straws to their own financial detriment. #lcsm
Kristine Cherol @kscoon
@JFreemanDaily I would feel that we tried everything. Just like we did when we contacted Ross Camidge and Lecia Sequist. If John wanted to try everything- I would help him. If he didnt- I would’ve stopped. Always his choice. #LCSM https://t.co/8NkLiTqWW2
#LCSM Chat @lcsmchat
RT @DrRiyazShah: @kscoon Umbrella/Basket trials often touted as a middle ground eg MATRIX. #lcsm
#LCSM Chat @lcsmchat
RT @LUNGevity: A5 cont' ..Roswell Park Cancer Institute is currently conducting a trial. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T5) My concern is that excitement re: CIMAVax is driven more by hype than data. Evidence is marginal w/CIMAVax up to now...…
#LCSM Chat @lcsmchat
RT @LUNGevity: A5: cont' Till the trial is complete, pts should decide their treatment after discussion w/their treating oncologist #lcsm
Dr Riyaz Shah @DrRiyazShah
T5: Yes they do but it’s a free world! Wish them the best and as a doc, always happy to see later and advise. #lcsm
H. Jack West, MD @JackWestMD
Damn. Don't know what we're missing. RT @JFreemanDaily: A lot of my tweets are not showing up in chat via https://t.co/xanI5xUbv1 ... #lcsm
#LCSM Chat @lcsmchat
RT @EdenLake: Well @cancertrek cimavax $12,500 cost, compared with EVERYTHING else at $19-20k+ for only 6 weeks... so financial detriment a…
#LCSM Chat @lcsmchat
RT @IanJPereira: @JFreemanDaily I wonder if #RTT will transfer the onus of education from the government to patients & providers. Messy for…
#LCSM Chat @lcsmchat
RT @GraceCordovano: @cancertrek A succinct overview on a single slide would be helpful. So many facets. #righttotry #lcsm
Brendon Stiles @BrendonStilesMD
@JackWestMD Safe advice: never fly to Cuba based upon hype alone. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: A lot of my tweets are not showing up in the chat via https://t.co/A2M7gY7Hvl ... **sigh** #lcsm
Janet Freeman-Daily @JFreemanDaily
@lgreco_ny Early phase trials often have pre-clinical data. #lcsm
H. Jack West, MD @JackWestMD
Agree w/personal freedom. Just want pts to be truly informed. RT @DrRiyazShah: T5: Yes they do but it’s a free world! #lcsm
Anita Figueras @scifiknitter
RT @khgeissler: @JackWestMD ICU stay might bankrupt wealthy families. Any hospitalization bankrupt many/most families. What % of LC deaths…
Gina @EAustin1969
I’m here just lurking, this head cold has me floored #LCSM
Eden Lake @EdenLake
@JFreemanDaily mine too, its not just you #lcsm
Dr Riyaz Shah @DrRiyazShah
RT @JackWestMD: T5) I'm completely behind studying these options in trials, e.g. CIMAVax study at Roswell Park. Just not flying to Cuba bas…
Faces of Lung Cancer @LungCancerFaces
I abandoned https://t.co/6aKkin23un because half the tweets aren't showing up. Stick with Twitter. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T5) I'm completely behind studying these options in trials, e.g. CIMAVax study at Roswell Park. Just not flying to Cuba bas…
#LCSM Chat @lcsmchat
RT @kscoon: @JFreemanDaily I would feel that we tried everything. Just like we did when we contacted Ross Camidge and Lecia Sequist. If Joh…
H. Jack West, MD @JackWestMD
I heard that from a Cuban doc, actually. RT @BrendonStilesMD: @JackWestMD Safe advice: never fly to Cuba based upon hype alone. #lcsm
Enlightening Results @GraceCordovano
@JFreemanDaily Ultimately, regardless of legislation, isn’t the main issue boil down to actual availability/supply of said therapy/drug? 🤔 #lcsm
#LCSM Chat @lcsmchat
RT @DrRiyazShah: T5: Yes they do but it’s a free world! Wish them the best and as a doc, always happy to see later and advise. #lcsm
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: @JackWestMD Safe advice: never fly to Cuba based upon hype alone. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @lgreco_ny Early phase trials often have pre-clinical data. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: Agree w/personal freedom. Just want pts to be truly informed. RT @DrRiyazShah: T5: Yes they do but it’s a free world! #lcsm
#LCSM Chat @lcsmchat
RT @LungCancerFaces: I abandoned https://t.co/6aKkin23un because half the tweets aren't showing up. Stick with Twitter. #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: I heard that from a Cuban doc, actually. RT @BrendonStilesMD: @JackWestMD Safe advice: never fly to Cuba based upon hype al…
#LCSM Chat @lcsmchat
RT @GraceCordovano: @JFreemanDaily Ultimately, regardless of legislation, isn’t the main issue boil down to actual availability/supply of s…
Bob Tufts @TuftsB
@JFreemanDaily #lcsm Yes, but you describe a possibility versus what is supposedly a definitive.
Janet Freeman-Daily @JFreemanDaily
RT @khgeissler: @JackWestMD #lcsm Lack of insurance seems like huge barrier. Incentives for insurers to say anything "new" a "complication"…
Leslie Trahan @lestrahan
RT @BrendonStilesMD: @JackWestMD Safe advice: never fly to Cuba based upon hype alone. #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @JackWestMD: T1) Right to try removes insurance coverage for complics of new treatments. Routine protocol safeguards not present w/Right…
#LCSM Chat @lcsmchat
RT @TuftsB: @JFreemanDaily #lcsm Yes, but you describe a possibility versus what is supposedly a definitive.
H. Jack West, MD @JackWestMD
OK, last topic in a minute, then we'll close. Good discussion, despite technical / https://t.co/xanI5xUbv1 difficulties. #lcsm
Brendon Stiles @BrendonStilesMD
@JackWestMD On the other hand, worth going for the Mojitos and culture. #lcsm
Janet Freeman-Daily @JFreemanDaily
Wow -- LOTS more tweets visible via Twitter feed. #lcsm
Faces of Lung Cancer @LungCancerFaces
This makes sense to me. #lcsm https://t.co/NF1ijVS2eA
Ryan HamNer @ryanhamner
Hello!👋 I'm late to the party. Question: I have recurrent/frequent pericarditis/myocarditis from radiation. Today I was offered to be a part of a study with a new drug for prevention. Not sure of the risks?🤔 Not even sure what questions to ask them. Doc opinions? Thanks! #lcsm
Kimberley H Geissler @khgeissler
@kscoon At some point, the Q w/ my mom became what did she want for her vs. what did she want to please us/not disappoint us. Tough Q for caregivers. https://t.co/u8IEy48ymZ
Eden Lake @EdenLake
Tchat is killing me tonight ugh #lcsm
#LCSM Chat @lcsmchat
#lcsm https://t.co/wVA3PT2bZ1
H. Jack West, MD @JackWestMD
T6) Should #LCSM community define consensus view on “Right to Try” legislation or should we defer on speaking w/1 voice on debatable issues?
Janet Freeman-Daily @JFreemanDaily
RT @JackWestMD: Complics requiring ICU stay could bankrupt person/family if insurance doesn't cover. RT @lestrahan: A3: the financial side…
#LCSM Chat @lcsmchat
RT @JackWestMD: OK, last topic in a minute, then we'll close. Good discussion, despite technical / https://t.co/xanI5xUbv1 difficulties. #l
Geri Massa @GeriGerim13
#lcsm https://t.co/SA7ah865XA
Leslie Trahan @lestrahan
@LungCancerFaces Yes, me too! #lcsm
Laura Greco @lgreco_ny
RT @lcsmchat: #lcsm https://t.co/wVA3PT2bZ1
Enlightening Results @GraceCordovano
@JackWestMD @TuftsB @JFreemanDaily @cancertrek Very true. Would add that many patients in clinical trials are afraid/hesitate to report side effects for fear of being removed from the trial. #lcsm
Geri Massa @GeriGerim13
#lcsm https://t.co/pdJ5LS4PKu
LUNGevity Foundation @LUNGevity
A6 we signed w/almost 40 other orgs in a letter to again express our strong opposition #lcsm
H. Jack West, MD @JackWestMD
RT @GraceCordovano: @JackWestMD @TuftsB @JFreemanDaily @cancertrek Very true. Would add that many patients in clinical trials are afraid/he…
Faces of Lung Cancer @LungCancerFaces
@BrendonStilesMD Cigars! Don't shoot me... @JackWestMD #lcsm
#LCSM Chat @lcsmchat
RT @LungCancerFaces: This makes sense to me. #lcsm https://t.co/NF1ijVS2eA
Ian Pereira @IanJPereira
@TuftsB @DrRiyazShah @JackWestMD @JFreemanDaily @cancertrek I've heard the analogy that health data is like water coming out of a fire hydrant - hard to take in and control. The FDA was mandated to help. #RTT may take that away - to the benefit of some, risk to others? #lcsm t4
#LCSM Chat @lcsmchat
RT @JFreemanDaily: Wow -- LOTS more tweets visible via Twitter feed. #lcsm
Bob Tufts @TuftsB
@JFreemanDaily #lcsm And remember patients in general should have a living will, power of attorney, DNR. Make your wishes known, own your last decision with your one life, take pressure off the family and physician. @MLIWI
Dr. Kelly Shanahan @stage4kelly
In an almost perfect world, FDA compassionate use would 1)require pharma to supply drug, 2) be less cumbersome (private practice oncs don't have IRBs), 3) would allow us access earlier, before on death's doorstep. Since world is far from perfect, RTT is an imperfect option #LCSM
Dr. Kelly Shanahan @stage4kelly
@lgreco_ny Yes! We advanced/metastatic patients aren't stupid and we should be allowed to take risks - we're dying anyway. ideally, I'd like to see CU tweaked, but until then RTT is another option, if you live in one of the 38 states where it's available now #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: T6) Should #LCSM community define consensus view on “Right to Try” legislation or should we defer on speaking w/1 voice on…
Brendon Stiles @BrendonStilesMD
@JackWestMD Tough question. But I think we are stronger by maintaining our ability to express diverse points of view. #lcsm
H. Jack West, MD @JackWestMD
RT @IanJPereira: @TuftsB @DrRiyazShah @JackWestMD @JFreemanDaily @cancertrek I've heard the analogy that health data is like water coming o…
#LCSM Chat @lcsmchat
RT @GraceCordovano: @JackWestMD @TuftsB @JFreemanDaily @cancertrek Very true. Would add that many patients in clinical trials are afraid/he…
#LCSM Chat @lcsmchat
RT @LUNGevity: A6 we signed w/almost 40 other orgs in a letter to again express our strong opposition #lcsm
Eden Lake @EdenLake
T6 i dont think there is a true consensus anywhere on this subject, so to profess to speak for the whole is false. I think we need to own our own opinions and recognize that there isnt an easy answer. @JackWestMD #lcsm
#LCSM Chat @lcsmchat
RT @IanJPereira: @TuftsB @DrRiyazShah @JackWestMD @JFreemanDaily @cancertrek I've heard the analogy that health data is like water coming o…
#LCSM Chat @lcsmchat
RT @TuftsB: @JFreemanDaily #lcsm And remember patients in general should have a living will, power of attorney, DNR. Make your wishes known…
#LCSM Chat @lcsmchat
RT @stage4kelly: In an almost perfect world, FDA compassionate use would 1)require pharma to supply drug, 2) be less cumbersome (private pr…
#LCSM Chat @lcsmchat
RT @stage4kelly: @lgreco_ny Yes! We advanced/metastatic patients aren't stupid and we should be allowed to take risks - we're dying anyway.…
H. Jack West, MD @JackWestMD
@EdenLake Very fair. I don't think we're close enough to any consensus to have an #LCSM position on the question.
Brendon Stiles @BrendonStilesMD
@LungCancerFaces @JackWestMD Awwwwww!!!!!!! I'm telling. #lcsm
#LCSM Chat @lcsmchat
RT @BrendonStilesMD: @JackWestMD Tough question. But I think we are stronger by maintaining our ability to express diverse points of view.…
#LCSM Chat @lcsmchat
RT @EdenLake: T6 i dont think there is a true consensus anywhere on this subject, so to profess to speak for the whole is false. I think we…
Anita Figueras @scifiknitter
RT @GraceCordovano: @JackWestMD @TuftsB @JFreemanDaily @cancertrek Very true. Would add that many patients in clinical trials are afraid/he…
Laura Greco @lgreco_ny
RT @stage4kelly: In an almost perfect world, FDA compassionate use would 1)require pharma to supply drug, 2) be less cumbersome (private pr…
Bob Tufts @TuftsB
RT @stage4kelly: In an almost perfect world, FDA compassionate use would 1)require pharma to supply drug, 2) be less cumbersome (private pr…
Caregivers Resource @4_Caregivers
RT @LUNGevity: A6 we signed w/almost 40 other orgs in a letter to again express our strong opposition #lcsm
#LCSM Chat @lcsmchat
RT @JackWestMD: @EdenLake Very fair. I don't think we're close enough to any consensus to have an #LCSM position on the question.
Laura Greco @lgreco_ny
RT @stage4kelly: @lgreco_ny Yes! We advanced/metastatic patients aren't stupid and we should be allowed to take risks - we're dying anyway.…
H. Jack West, MD @JackWestMD
Agree. Many issues overlap across communities. RT @lgotl1230: @JackWestMD bcsm’er here, maybe good time 4 all groups to get together. #lcsm
Eden Lake @EdenLake
RT @TuftsB: @JFreemanDaily #lcsm And remember patients in general should have a living will, power of attorney, DNR. Make your wishes known…
Bob Tufts @TuftsB
@stage4kelly #lcsm That sparagraph should be a goal of the FDA.
Leslie Trahan @lestrahan
RT @EdenLake: T6 i dont think there is a true consensus anywhere on this subject, so to profess to speak for the whole is false. I think we…
Anita Figueras @scifiknitter
RT @TuftsB: @JFreemanDaily #lcsm And remember patients in general should have a living will, power of attorney, DNR. Make your wishes known…
#LCSM Chat @lcsmchat
RT @JackWestMD: Agree. Many issues overlap across communities. RT @lgotl1230: @JackWestMD bcsm’er here, maybe good time 4 all groups to get…
Eden Lake @EdenLake
RT @BrendonStilesMD: @JackWestMD Tough question. But I think we are stronger by maintaining our ability to express diverse points of view.…
H. Jack West, MD @JackWestMD
Thanks to all for participating in good discussion. Not surprised no clear answer, but makes us think. Closing thoughts? #lcsm
Enlightening Results @GraceCordovano
@JFreemanDaily There is much work being done to examine and improve clinical trial design by the FDA. #lcsm
Leslie Trahan @lestrahan
RT @stage4kelly: @lgreco_ny Yes! We advanced/metastatic patients aren't stupid and we should be allowed to take risks - we're dying anyway.…
Eden Lake @EdenLake
RT @JackWestMD: @EdenLake Very fair. I don't think we're close enough to any consensus to have an #LCSM position on the question.
Dr Riyaz Shah @DrRiyazShah
@stage4kelly Also mandate collection of data on outcome and toxicity #LCSM
Leslie Trahan @lestrahan
RT @stage4kelly: In an almost perfect world, FDA compassionate use would 1)require pharma to supply drug, 2) be less cumbersome (private pr…
Bob Tufts @TuftsB
@stage4kelly #lcsm That paragraph should be one of the FDA goals
Kimberley H Geissler @khgeissler
@JackWestMD does RTT exacerbate inequities in access to/quality of care? If it actually makes patients better off, then likely yes b/c have to be extremely informed and/or have onc going well beyond SOC tx. #lcsm
H. Jack West, MD @JackWestMD
RT @DrRiyazShah: @stage4kelly Also mandate collection of data on outcome and toxicity #LCSM
Eden Lake @EdenLake
RT @DrRiyazShah: @stage4kelly Also mandate collection of data on outcome and toxicity #LCSM
Dr. Kelly Shanahan @stage4kelly
Kelly from metastatic breast cancer land here. In a perfect world all advanced/metastatic cancer patients would be in clinical trials (in their hometowns) and this would be moot. #LCSM
Leslie Trahan @lestrahan
RT @TuftsB: @JFreemanDaily #lcsm And remember patients in general should have a living will, power of attorney, DNR. Make your wishes known…
Brendon Stiles @BrendonStilesMD
@JackWestMD Tough questions matter. Thanks for addressing these topics. #lcsm
Karen Loss @cancertrek
T6: I think finances are important. RTT drug costs come out of pt. pocket. No insurance there. Cd bankrupt people grasping at straws. #lcsm
Janet Freeman-Daily @JFreemanDaily
@ryanhamner Hi Ryan. This chat focuses on topics (as listed in the https://t.co/39i0y9oxgJ blog). Unless it's an open mic night, we don't have much time to address off topic questions. Also, docs in this chat are primarily lung cancer specialists. #lcsm
Faces of Lung Cancer @LungCancerFaces
@lgotl1230 Agree! Mets patients have so much in common. Primary site not important. @JackWestMD #lcsm
H. Jack West, MD @JackWestMD
Great to cover these issues together. RT @BrendonStilesMD: @JackWestMD Tough questions matter. Thanks for addressing these topics. #lcsm
Vanessa V @shewithcapitalv
RT @ryanhamner: Hello!👋 I'm late to the party. Question: I have recurrent/frequent pericarditis/myocarditis from radiation. Today I was off…
Bob Tufts @TuftsB
RT @stage4kelly: @lgreco_ny Yes! We advanced/metastatic patients aren't stupid and we should be allowed to take risks - we're dying anyway.…
#LCSM Chat @lcsmchat
RT @JackWestMD: Thanks to all for participating in good discussion. Not surprised no clear answer, but makes us think. Closing thoughts? #l
#LCSM Chat @lcsmchat
RT @GraceCordovano: @JFreemanDaily There is much work being done to examine and improve clinical trial design by the FDA. #lcsm
#LCSM Chat @lcsmchat
RT @DrRiyazShah: @stage4kelly Also mandate collection of data on outcome and toxicity #LCSM
#LCSM Chat @lcsmchat
RT @khgeissler: @JackWestMD does RTT exacerbate inequities in access to/quality of care? If it actually makes patients better off, then lik…
Kristine Cherol @kscoon
I think there’s a clear line between patients/caregivers and doctors/patient/advocacy groups. Finding the middle ground will be key. Mist remember we’re all on the same team but pts must be selfish for own care. #LCSM https://t.co/gjFHWxCuCf
#LCSM Chat @lcsmchat
RT @stage4kelly: Kelly from metastatic breast cancer land here. In a perfect world all advanced/metastatic cancer patients would be in clin…
Geri Massa @GeriGerim13
Is there 1 site with ALL trials listed? #lcsm
#LCSM Chat @lcsmchat
RT @cancertrek: T6: I think finances are important. RTT drug costs come out of pt. pocket. No insurance there. Cd bankrupt people grasping…
H. Jack West, MD @JackWestMD
Thx for joining. Transcript will be provided soon. Pls stay tuned for next topic, upcoming #LCSM chat in 2 weeks, same time, 2/22.
#LCSM Chat @lcsmchat
RT @LungCancerFaces: @lgotl1230 Agree! Mets patients have so much in common. Primary site not important. @JackWestMD #lcsm
Janet Freeman-Daily @JFreemanDaily
Thanks @jackwestmd and #LCSM for an interesting chat on tough questions. I appreciate hearing various viewpoints. See you in two weeks!
#LCSM Chat @lcsmchat
RT @kscoon: I think there’s a clear line between patients/caregivers and doctors/patient/advocacy groups. Finding the middle ground will be…
#LCSM Chat @lcsmchat
RT @JackWestMD: Thx for joining. Transcript will be provided soon. Pls stay tuned for next topic, upcoming #LCSM chat in 2 weeks, same time…
april knowles @akknowles1
So boo- I wanted to join tonight but I’m an hour late I guess. MBC patient and very interested in this topic I’ll read through tweets #lcsm
Janet Freeman-Daily @JFreemanDaily
@GeriGerim13 You can find the database of available clinical trials (including expanded access) on https://t.co/XhI9Oc9014 #lcsm
Bob Tufts @TuftsB
@JackWestMD @lgotl1230 #lcsm Remember do not count me, I am just a myeloma patient who cares about all cancer patients and their journeys -,and learns from all of you!. :)
Dr. Kelly Shanahan @stage4kelly
Yes! Advocates for all advanced/metastaric cancers have more in common than not. Lung cancer for sure needs a bigger slice of the research pie, as does metastatic cancers #lcsm @METUPorg https://t.co/YKqzjJt30k
Brendon Stiles @BrendonStilesMD
Good night everyone. Have been missing the #lcsm community. Looking forward to reconnecting with many at @freetobreathe @lung_fund LCLC tomorrow in Atlanta!!!! #lcsm
Eden Lake @EdenLake
Ran meright down to 9% battery but I made it! Glad to be able to have conversations of this depth respectfully/supportively in a group of people with a lot hanging in the balance. #lcsm
Janet Freeman-Daily @JFreemanDaily
RT @BrendonStilesMD: @JackWestMD Tough question. But I think we are stronger by maintaining our ability to express diverse points of view.…
Leslie Trahan @lestrahan
Thanks @JackWestMD and #LCSM! Great chat! Wishing you all the best treatment and options in the future. #lcsm
Karen Loss @cancertrek
Thanks for moderating, Jack. Goodnight all. #lcsm
Laura Greco @lgreco_ny
RT @kscoon: I think there’s a clear line between patients/caregivers and doctors/patient/advocacy groups. Finding the middle ground will be…
Anita Figueras @scifiknitter
@BrendonStilesMD @freetobreathe @Lung_Fund See you tomorrow in Atlanta! #lcsm
Anita Figueras @scifiknitter
RT @EdenLake: Ran meright down to 9% battery but I made it! Glad to be able to have conversations of this depth respectfully/supportively i…
Leslie Trahan @lestrahan
RT @stage4kelly: Yes! Advocates for all advanced/metastaric cancers have more in common than not. Lung cancer for sure needs a bigger slice…
Dr. Kelly Shanahan @stage4kelly
@TuftsB .@FDAOncology @tmprowell who do we need to talk to about expanded access/compassionate use? #lcsm #bscm @METUPorg
Bob Steele @steele_bob
Good night all. See you in 2 weeks. #lcsm
Dr. Kelly Shanahan @stage4kelly
@DrRiyazShah FDA does, RTT doesn't (which is one of my concerns about RTT as currently written). #lcsm
Bob Tufts @TuftsB
RT @khgeissler: @JackWestMD #lcsm Lack of insurance seems like huge barrier. Incentives for insurers to say anything "new" a "complication"…
Dr. Kelly Shanahan @stage4kelly
Thank you for letting this #bcsm join in #LCSM
Matthew Katz, MD @subatomicdoc
RT @khgeissler: @JackWestMD #lcsm Lack of insurance seems like huge barrier. Incentives for insurers to say anything "new" a "complication"…
Enlightening Results @GraceCordovano
@JackWestMD @lestrahan So difficult to get so many approved SOC therapies or procedures reimbursed/approved in a timely manner. The financial repercussions could be catastrophic with RTT 😬 #lcsm
Anita Figueras @scifiknitter
A respectful discussion of a difficult topic - this is why I love #lcsm. Thanks @JackWestMD for moderating. #lcsm
Janet Freeman-Daily @JFreemanDaily
@TuftsB @MLIWI Advance directives and living wills do not always assuage the guilt/remorse felt by patient's surrogate decision maker when things go wrong. Trust me, I speak from experience. #lcsm
Ian Pereira @IanJPereira
Great discussion #lcsm. Interested to see what comes of #RTT and healthcare deregulation.
Janet Freeman-Daily @JFreemanDaily
@lgreco_ny Sorry I didn't see your comments, Laura -- remember to include #LCSM in your tweets so they will be included in the chat (although tonight the Twitter gremlins seems to eat tweets regardless)
Enlightening Results @GraceCordovano
@JFreemanDaily Absolutely. Tough enough to get SOC treatments & procedures approved sometimes. #lcsm
Deena Cook @DeenaRoger
RT @TheALCF: Bipartisan Act Puts Focus on Women With Lung Cancer https://t.co/TMaCOVer64 #LCSM #beatlungcancer
Deena Cook @DeenaRoger
RT @jillfeldman4: We desperately need the influential & respected voices of news anchors to tell the real story of lung cancer & help illum…
Bob Tufts @TuftsB
@JFreemanDaily @MLIWI I know you have experienced this in the lung cancer community far too often &gaps exist. My mother in law had all.these but it did not ease our conscience as caregivers when we ran up against administration who wanted added treatments done which violated that DNR #lcsm
Ian Pereira @IanJPereira
RT @DrRiyazShah: @lgreco_ny As an oncologist I see both sides to this. It’s really tricky. We feel bad that vulnerable pts and care givers…
Deena Cook @DeenaRoger
RT @TheALCF: We join the @LCAorg and other lung cancer advocacy groups in praising Bipartisan, Bicameral Congressional Leadership on Women…
#LCSM Chat @lcsmchat
RT @EdenLake: Ran meright down to 9% battery but I made it! Glad to be able to have conversations of this depth respectfully/supportively i…
#LCSM Chat @lcsmchat
RT @stage4kelly: Yes! Advocates for all advanced/metastaric cancers have more in common than not. Lung cancer for sure needs a bigger slice…
#LCSM Chat @lcsmchat
RT @GraceCordovano: @JackWestMD @lestrahan So difficult to get so many approved SOC therapies or procedures reimbursed/approved in a timely…
#LCSM Chat @lcsmchat
RT @scifiknitter: A respectful discussion of a difficult topic - this is why I love #lcsm. Thanks @JackWestMD for moderating. #lcsm
#LCSM Chat @lcsmchat
RT @JFreemanDaily: @TuftsB @MLIWI Advance directives and living wills do not always assuage the guilt/remorse felt by patient's surrogate d…
#LCSM Chat @lcsmchat
RT @TuftsB: @JFreemanDaily @MLIWI I know you have experienced this in the lung cancer community far too often &gaps exist. My mother in law…
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