#LCSM Transcript
Healthcare social media transcript of the #LCSM hashtag.
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| Profile | Tweet |
|---|---|
 | 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 @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… |
| #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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