#LCSM Transcript
Healthcare social media transcript of the #LCSM hashtag.
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See #LCSM Influencers/Analytics.
| 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 |
 | #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 |
| @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 |
| @LungCancerFaces @cancertrek Hi Karen! #lcsm | |
| Janet Freeman-Daily @JFreemanDaily Hi @cancertrek! #lcsm |
| @LungCancerFaces @steele_bob Hi Bob! How's your wife? #lcsm | |
| Janet Freeman-Daily @JFreemanDaily Welcome @steele_bob ! #lcsm |
 | Jill Feldman @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 |
| @LungCancerFaces @jillfeldman4 Hey Jill! Great video with Ivy! Thank you. #lcsm | |
| @LungCancerFaces [REDACTED USER] Welcome! #lcsm | |
 | Diane 🧚🏻♀️ @diianeee Hello! #lcsm |
| Janet Freeman-Daily @JFreemanDaily Hi [REDACTED USER] ! 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 |
| #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 |
 | Leslie Trahan @lestrahan Hi all! Leslie from Louisiana here. CG to husband with Stage IV NSCLC for almost 5 years #LCSM |
| Janet Freeman-Daily @JFreemanDaily Hi Leslie @lestrahan #lcsm |
| @LungCancerFaces @LUNGevity Hey, Katie! Great to see you. #lcsm | |
 | Cori @coristarlit Cori here for my first #LCSM. Hi all! |
| LUNGevity Foundation @LUNGevity RT @coristarlit: Cori here for my first #LCSM. Hi all! |
| @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 |
| @LungCancerFaces @diianeee Hey, you! #lcsm | |
| @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 |
| @LungCancerFaces @kscoon Hello, Kristine. Sending much love and respect your way, sweetie. #lcsm | |
| Leslie Trahan @lestrahan @coristarlit Welcome #LCSM |
| @LungCancerFaces [REDACTED USER] Hey stranger! #lcsm | |
| Janet Freeman-Daily @JFreemanDaily Welcome @kscoon!. Good to see you again [REDACTED USER]. #lcsm |
| @LungCancerFaces @EdenLake Best hopes, Eden. #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 |
| 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 |
| 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 @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… |
| 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 |
| 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 |
| @dennycee Hey all late, will be in and out. Great topic. #lcsm | |
| Janet Freeman-Daily @JFreemanDaily Hiya @dennycee #lcsm |
| @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 |
| @ Hi y'all 😊 I set my Alarm to remind me , i turned it off and still forgot .. #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 |
 | 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… |
| #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 |
 | 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 |
| 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 |
| 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 @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… |
 | Laura Greco @lgreco_ny Laura here #lcsm |
| Janet Freeman-Daily @JFreemanDaily Anyone know if Right to Try legislation is binding on drug companies that are not based in the USA? #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 |
| 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 |
| 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 |
| 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 |
| Bob Steele @steele_bob RT @LUNGevity: A2:cont... & undercuts the clinical trials process which benefits larger numbers of pts #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… |
| #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… |
| 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 |
| 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 |
| @ T2 I think a parent should habe an option, to discuss all treatment options #lcsm | |
| Laura Greco @lgreco_ny @LUNGevity Except that a lot of patients can't get into clinical trials either because of location, pre-existing condition limitations, or it's flat out closed. |
| #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.… |
| 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 [REDACTED USER] That info would be nice to have #LCSM |
| 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 |
| 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… |
| @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 | |
| #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 @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 @LungCancerFaces: T2: Devil's advocate: In California, I have the right to legally take my own life if terminal. Shouldn't I have the #… |
| @ 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 |
| #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… |
| 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 |
| @LungCancerFaces Interesting question. #lcsm https://t.co/CPHTRlZGt9 | |
 | Brendon Stiles @BrendonStilesMD Arriving late! S #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 |
| 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 |
| @LungCancerFaces @BrendonStilesMD We miss you, too! #lcsm | |
| Leslie Trahan @lestrahan @LungCancerFaces Ummm, yes! #lcsm |
| Brendon Stiles @BrendonStilesMD Critical topic for cancer patients. #lcsm |
| @ 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 |
| 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… |
| #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 @JFreemanDaily: @TuftsB @cancertrek @MLIWI @TuftB "...as long as snake oil salesman are punished"--I think that is one of the huge issue… |
| Laura Greco @lgreco_ny A3: does anyone find the position against RTT extremely paternalistic? #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… |
| #LCSM Chat @lcsmchat @LungCancerFaces Hey, Patty! I see you. Remember to include #LCSM in your tweets. xo |
| Janet Freeman-Daily @JFreemanDaily This is a tough chat to keep up with -- each comment has deeper implications that get me thinking #lcsm |
| 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 |
| 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 @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 @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 |
| #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 |
| Karen Loss @cancertrek T4: Clinical trial participation has much bigger problems than RTT. #lcsm |
| 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 |
| Laura Greco @lgreco_ny @BrendonStilesMD @cancertrek True: but the stakes for patients are terribly high. Doctors should learn to communicate these factors, or provide a lengthy disclosure with a 24 hour cooling off period. |
| #LCSM Chat @lcsmchat RT @cancertrek: T4: Clinical trial participation has much bigger problems than RTT. #lcsm |
| 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… |
| 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 |
| @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 |
| 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 @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 @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 @… |
| #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 |
 | 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 |
| #LCSM Chat @lcsmchat RT @BrendonStilesMD: @cancertrek This is true. Expansion to real world patients then often leads to disappointing results. #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 |
| #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… |
| Sarah Jeffords @sarahkilgore23 @EmoryUniversity #lcsm https://t.co/5TE6Ptvi5W |
| Bob Tufts @TuftsB [REDACTED USER] @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 |
| #LCSM Chat @lcsmchat RT @TuftsB: [REDACTED USER] @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… |
| LUNGevity Foundation @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 |
| 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 |
| Brendon Stiles @BrendonStilesMD @JFreemanDaily Me too! #lcsm |
| #LCSM Chat @lcsmchat RT @LUNGevity: A5 cont' ..Roswell Park Cancer Institute is currently conducting a trial. #lcsm |
| #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 |
 | Gina @EAustin1969 I’m here just lurking, this head cold has me floored #LCSM |
| @LungCancerFaces I abandoned https://t.co/6aKkin23un because half the tweets aren't showing up. Stick with Twitter. #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 @BrendonStilesMD: @JackWestMD Safe advice: never fly to Cuba based upon hype alone. #lcsm |
| #LCSM Chat @lcsmchat RT @JackWestMD: Agree w/personal freedom. Just want pts to be truly informed. RT [REDACTED USER]: 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 |
| 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 |
| #LCSM Chat @lcsmchat RT @TuftsB: @JFreemanDaily #lcsm Yes, but you describe a possibility versus what is supposedly a definitive. |
| 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 |
| @LungCancerFaces This makes sense to me. #lcsm https://t.co/NF1ijVS2eA | |
| #LCSM Chat @lcsmchat #lcsm https://t.co/wVA3PT2bZ1 |
| @ #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 |
| @ #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 |
| @LungCancerFaces @BrendonStilesMD Cigars! Don't shoot me... @JackWestMD #lcsm | |
| #LCSM Chat @lcsmchat RT @LungCancerFaces: This makes sense to me. #lcsm https://t.co/NF1ijVS2eA |
| #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 |
| #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 |
| #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.… |
| 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.… |
| 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… |
| @ @LungCancerFaces @BrendonStilesMD @JackWestMD My Boss gets his cigars from Cuba ... He is from Havana | |
| 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… |
| #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.… |
| Bob Tufts @TuftsB @stage4kelly #lcsm That sparagraph should be a goal of the FDA. |
| 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… |
| 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.… |
 | Traves Crabtree @TravesCrabtree @DrewMoghanaki Great spin on repetitive data from the Netherlands. Certainly highlights importance of surgical quality in Thoracic surgery. If you keep saying it, it may come true......in the Netherlands |
| 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 |
| 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 |
| @LungCancerFaces @lgotl1230 Agree! Mets patients have so much in common. Primary site not important. @JackWestMD #lcsm | |
| 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 @GraceCordovano: @JFreemanDaily There is much work being done to examine and improve clinical trial design by the FDA. #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… |
| @ 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… |
| #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 @JackWestMD: Thx for joining. Transcript will be provided soon. Pls stay tuned for next topic, upcoming #LCSM chat in 2 weeks, same time… |
| 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 |
| 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 |
| Anita Figueras @scifiknitter @BrendonStilesMD @freetobreathe @Lung_Fund See you tomorrow in Atlanta! #lcsm |
| 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 [REDACTED USER] 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 |
| 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 |
| 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 |
| #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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