#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | NCI Cancer Stats @NCICancerStats Check out our DYK video to learn more about brain and other nervous system cancers: https://t.co/8DO4EcLdod #BTSM |
 | OurBrainBank @ourbrainbank @BTSMchat Hi #BTSM it's jessica from @ourbrainbank here |
 | I Live Now Rachel 💎 @KickBrainTumors RT @neulpt: Hey #BTSM how about this for #visualabstract? Just to get you started for tonight’s tweetup |
 | Lisa O'Leary @lisaoleary524 Hi all, happy holidays! Lisa here. Former care partner to my late husband Patrick, dx with #GBM 9/2014, passed away 7/2015. Now an advocate for this amazing community. #BTSM |
 | KateWhy @KattyBatty1 @BTSMchat #BTSM. Hi all. Listening tonight. |
 | Sean Sachdev, MD @SeanSachdevMD @BTSMchat Hi all, radiation oncologist from chicago #btsm |
 | Edjah Nduom, MD (he/him) @EKNduom @BTSMchat I'm going to get the intro right this time - I'm Edjah Nduom, a neurosurgeon-scientist at the @NIH @NIHBrainTumor @NINDStrials, working on immune therapy for glioblastoma patients :-) #BTSM |
 | Liz Salmi @TheLizArmy 👋 Hi Twitter friends! Liz here: Living with low grade glioma (astrocytoma) for 10 years. 🦄 ✔️2 craniotomies ✔️24 months Temodar ✔️No radiation ✔️All the anti-seizure meds! #BTSM |
 | YoChing @YoChing2 Hi all, I used to work at Genentech (drug dev strategy) and now I do personalized clinical trial matching and other q&a at Cancer Commons, focused in GBM. Looking forward to the discussion! #btsm |
| Liz Salmi @TheLizArmy @LisaJaayyy Great to see you! Glad you popped in. #BTSM |
 | CERN Foundation @CERNfoundation Starting now @BTSMchat about clinical trials. Follow along and share #BTSM and ependymoma community. |
 | Matt Cotcher @MLCotcher Welcome, folks. Glad to be with y’all tonight. Matt (in Georgia - USA); 11 years of ependymoma challenges. #BTSM |
 | Kendra K @KMJtravels @BTSMchat Kendra In Seattle, #glioblastoma. Took lomustine last night, get Avastin tomorrow... #btsm |
 | Erica Robinson @eleighrobs @BTSMchat Hi! Erica here, from Boston. @NBTStweets advocate, team captain, survivor...and sometimes I capitalize those, and sometimes I don't. Hahaha! #BTSM |
| Liz Salmi @TheLizArmy @YoChing2 Thanks for joining! It is rare we get an industry perspective on the chat. Very important for this topic. #BTSM |
 | Katie Mang @KatieMang @BTSMchat Hello! Katie (and, Pete) here tonight. I am a care partner to husband Pete dx with gbm in June. #btsm |
 | Claire Snyman @clairehsnyman @BTSMchat Hi there - signing in from son’s #hockeygame 🏒 in Vancouver. Happy to be here tonight. #btsm |
 | Guy Lipof - גיא @Project2Program @BTSMchat I'm Guy, partner to Susie who is a longterm brain cancer survivor (G3 OA 1999, GBM IDH1 2013) via @MDABrainSpine. I also work for @IBMWatsonHealth specifically focusing #AI solutions related to Oncology and Genomics. #BTSM |
| Liz Salmi @TheLizArmy @KatieMang @BTSMchat Thanks for joining us! Great to have new voices on the chat... Hi Pete! #BTSM |
 | Victoria @V_BBurns @BTSMchat Hello! Victoria, here. Pilocytic Astrocytoma. Craniotomy. All happened in 2009. Follow up MRIs every 9mos currently at @NIHBrainTumor . Happy to be here tonight #BTSM |
| Lisa O'Leary @lisaoleary524 @BTSMchat I also want to recognize another friend from the BT community - Cedric Rhoads' wife Stefanie passed from #GBM last night. Let's extend condolences to their family as well. #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors Hello! Listening in. Taking in all the BRAIN knowledge 🧠 #BTSM @HYHUTriangle Rachel~ |
| Lisa O'Leary @lisaoleary524 @KatieMang @BTSMchat Hi Katie!! Glad to see you! #BTSM |
| Erica Robinson @eleighrobs @laitisam @BTSMchat @NBTStweets Yay! Hi Lainey! #BTSM |
| Liz Salmi @TheLizArmy @lisaoleary524 @BTSMchat Thank you for sharing that with us, Lisa. You are really plugged into so many facets of our community. #BTSM |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Sabine here. AA3 survivor of 4.5 years. Brain Tumor advocate and member of the advisory council for @theABTA. Always happy to talk about all things brain tumor. Looking forward to tonight's topic! #btsm |
| I Live Now Rachel 💎 @KickBrainTumors Resting up for early morning P/T #BTSM |
| Liz Salmi @TheLizArmy @laitisam @BTSMchat @NBTStweets Hey Lainey! Great timing. Looking for the main topics (T1, T2) and respond! You will have great insight. #BTSM |
| Lisa O'Leary @lisaoleary524 T1: Standard of care prognosis for the most aggressive types of brain tumors is generally abysmal. Clinical trials give hope of prolonged survival. Also to help improve the experience for future diagnosees. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat Listening with ears wide open to this one... #BTSM |
 | National Brain Tumor Society @NBTStweets RT @lisaoleary524: T1: T1: Standard of care prognosis for the most aggressive types of brain tumors is generally abysmal. Clinical trials give hope of prolonged survival. Also to help improve the experience for future diagnosees. #BTSM |
| Matt Cotcher @MLCotcher It’s wonderful to see so many intros. Not only is the #BTSM effort growing, it’s also a positive sign that treatments and QOL are improving. #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T1: I USED TO think people would be interested in clinical trials only AFTER exhausting all other treatment options, but I am now learning people should start considering the ability to "qualify" for trials sooner--before starting any treatment. 🤷♀️ #BTSM |
| YoChing @YoChing2 T1: many trials add something to the standard regimen. So you are getting the “known” plus a chance of a better response with an investigational drug added #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat I used to think clinical trials are the last resort after SOC fails. I learned recently that there are diagnostic and preventative trials also. In fact, I just enrolled in a diagnostic trial with @sloan_kettering #btsm |
 | Flemming Rasmussen @fgrazz Flemming - Listening in from Halifax, Canada #btsm |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T1: potential to get treatment that goes beyond standard of care. It should always be part of the discussion upfront; there are certain trials that ask questions for specific mutations or lesion subtypes, building on years of preclinical and translational data. #btsm |
| National Brain Tumor Society @NBTStweets RT @TheLizArmy: @BTSMchat T1: @BTSMchat T1: I USED TO think people would be interested in clinical trials only AFTER exhausting all other treatment options, but I am now learning people should start considering the ability to "qualify" for trials sooner--before starting any treatment. 🤷♀️ #BTSM |
| National Brain Tumor Society @NBTStweets RT @Sabine_NJ: @BTSMchat I used to think clinical trials are the last resort after SOC fails. I learned recently that there are diagnostic and preventative trials also. In fact, I just enrolled in a diagnostic trial with @sloan_kettering #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @adamhayden This is what I do, too! #btsm |
| Kendra K @KMJtravels @BTSMchat T1: with no cure for #glioblastoma my team discussed the need to explore #clinicaltrials from the beginning #btsm |
| Guy Lipof - גיא @Project2Program T1 - We participated in early #clinicaltrials for Temozolomide, that is now standard of care for many brain cancers. I'd like to think our participation helped w/ dosage & administration guidelines used today and a better outcome for my sweetheart. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy @BTSMchat I love that we both started our answers with "I used to think". Highlights that much education is needed in this area! #btsm |
 | Lynne P. Taylor, M.D. @neulpt @BTSMchat #btsm |
| Liz Salmi @TheLizArmy @Sabine_NJ @BTSMchat @sloan_kettering Same here, Sabine! I used to think all trials were the same (taking an experimental drug), but more recently learned trials may be: - therapeutic (a drug, device) - observational (such as @gliomaregistry) - or looking at a method of treatment delivery (trial design?) #BTSM |
| Victoria @V_BBurns @BTSMchat T1: One would be interested in a clinical trial to try a treatment that may not yet be readily available to the masses. Also, to advance research & medicine. I think clinical trials should be considered from diagnosis onward. The very beginning. #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T1 (2): A match of trial & pt benefits both -- a specific intervention suited to the lesion/tumor may be effective - simultaneously allowing the study to reach a conclusion which would ultimately affect how everyone is treated. Every standard of care started as a trial! #btsm |
| Liz Salmi @TheLizArmy @fgrazz Welcome! Join in the convo any time... #BTSM |
| Liz Salmi @TheLizArmy RT @sean_sachdev: @BTSMchat T1: @BTSMchat T1: potential to get treatment that goes beyond standard of care. It should always be part of the discussion upfront; there are certain trials that ask questions for specific mutations or lesion subtypes, building on years of preclinical and translational data. #btsm |
 | Barb Toof @Btoof @BTSMchat My husband has participated in 3. I think mostly to help others. #btsm |
| National Brain Tumor Society @NBTStweets RT @Sabine_NJ: @TheLizArmy @BTSMchat I love that we both started our answers with "I used to think". Highlights that much education is needed in this area! #btsm |
| Matt Cotcher @MLCotcher T1: If for no other reason than posterity, patients should always consider clinical trials. As current patients, we need to do what we can to improve treatments and advance outcomes. #BTSM |
| National Brain Tumor Society @NBTStweets RT @sean_sachdev: @BTSMchat T1 (2): @BTSMchat T1 (2): A match of trial & pt benefits both -- a specific intervention suited to the lesion/tumor may be effective - simultaneously allowing the study to reach a conclusion which would ultimately affect how everyone is treated. Every standard of care started as a trial! #btsm |
| Sean Sachdev, MD @SeanSachdevMD @TheLizArmy @Sabine_NJ @BTSMchat @sloan_kettering @gliomaregistry T1: in radiation oncology, dose (Gy) for low grade gliomas and high grade gliomas (more historic data) all decided by trial data - for high grade lesions, we are now asking if even more may be better w/ TMZ #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @MLCotcher: T1: T1: If for no other reason than posterity, patients should always consider clinical trials. As current patients, we need to do what we can to improve treatments and advance outcomes. #BTSM |
 | Michael Nathanson @Nathanson_MJ #BTSM |
| YoChing @YoChing2 @TheLizArmy @Sabine_NJ @BTSMchat @sloan_kettering @gliomaregistry Trial design is also really important to be aware of - is it an early “dose finding” study where you may not get enough drug to do anything, is it a late phase trial that has a comparator arm that only offers SOC or a placebo, etc. Things to consider before enrolling #btsm |
| Liz Salmi @TheLizArmy @Sabine_NJ @BTSMchat I don't know if it is good or bad that it has taken a full 10 years for me to be able to say "I used to think." Does it take 10yrs to fully comprehend what I know now, or can we speed up the learning curve using new communications tools? #BTSM |
| Guy Lipof - גיא @Project2Program @TheLizArmy @BTSMchat T1 - I agree with your sentiments Liz. We started with #ClinicalTrials from the outset. I think patients and their care advocates need to carefully understand our options. It is important to understand inclusion and exclusion criterion. #BTSM |
| Liz Salmi @TheLizArmy "Every standard of care started as a trial!" - @sean_sachdev #BTSM #mindblown |
| OurBrainBank @ourbrainbank @BTSMchat T2 // idea: part of SOC should be to keep patients regularly updated on clinical trials. Part of duty of care, looking out for best option always for patients. In addition, patients often want to share thoughts abt CT w other patients. We prop up facebook! #btsm |
| Flemming Rasmussen @fgrazz @BTSMchat @sean_sachdev Really appreciate the neutrality of standard of care...trmnt options can originate from multiple approaches #btsm |
| National Brain Tumor Society @NBTStweets @BTSMchat We do our best to promote discussions between patients and their medical team. #clinicaltrials https://t.co/jyW0C6nnh5 #btsm |
| Liz Salmi @TheLizArmy @md_vyshak "several studies have shown that clinical trial participation improves patient outcomes, even if the intervention being studied may not work" Do you think this is due to a placebo effect? #BTSM |
| Katie Mang @KatieMang @BTSMchat T2: Should it be from the doc and should we trust that he will bring it up when it's needed for me? - Pete. As a care partner (and more tuned into benefits of CTs from my job), I have been more inclined to search. #btsm |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T2: Should be part of the discussion from the beginning! Frank discussion with your treatment team about what is available/candidacy. Some major trials through cooperative groups may be open nationwide at multiple institutions. Or some may be institution specific #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T2: Pts should learn about ALL treatment options, including trials, at time of diagnosis, or shortly thereafter. If not through HCP, they should be pointed to an organization providing information about it. #btsm |
| Guy Lipof - גיא @Project2Program @BTSMchat T2 - This is a great question! We learned about #ClinicalTrials as an option after surgery. Fortunately, we were at @MDABrainSpine which had options for discussion for consideration alongside standard of care, which as PCV at the time. #BTSM |
| National Brain Tumor Society @NBTStweets RT @Sabine_NJ: @BTSMchat T2: @BTSMchat T2: Pts should learn about ALL treatment options, including trials, at time of diagnosis, or shortly thereafter. If not through HCP, they should be pointed to an organization providing information about it. #btsm |
 | Aldo J HenBer @HenBer_AJ RT @KickBrainTumors: Resting up for early morning P/T #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T2 Because of how difficult gliomas are to treat, personally, I think ideally patients would consider a clinical trial at the 1st suspicion of a glioma, before the 1st surgery. Most brain tumor surgeries are still done by non-specialists, tumor thrown away after diagnosis #BTSM |
| Matt Cotcher @MLCotcher T2: Sir Francis Bacon had it right, knowledge is, in fact, power. Newly diagnosed people should start researching clinical trials while getting 2nd opinions. Many trials are meant to replace or be in addition to planned SOC. #BTSM |
| YoChing @YoChing2 @TheLizArmy @md_vyshak It could be - I’ve also wondered if it’s that trial sites may be playing closer attention to participants, which improves care and outcomes in general #btsm |
| Barb Toof @Btoof @Project2Program My husband dx 8/09. Has had temozolomide twice with amazing results. Thank you! #BTSM |
 | Lainey @laitisam RT @NBTStweets: @BTSMchat We do our best to promote discussions between patients and their medical team. #clinicaltrials https://t.co/jyW0C6nnh5 #btsm |
| Kendra K @KMJtravels @BTSMchat T2: everyone’s pathology is so different and there’s new findings coming every week so I think it needs to be ongoing discussions with your care team #BTSM |
| Flemming Rasmussen @fgrazz T2 // More in a patient's court...I would be surprised if from time to time they don't initiate a 'trial' discussion #btsm |
| OurBrainBank @ourbrainbank T2 Such a critical point. How can we get word out to non-specialist surgeons? Without tumor sample left patients post surgery left in v tricky spot #btsm |
| Liz Salmi @TheLizArmy RT @EKNduom: @BTSMchat T2 Because of how difficult gliomas are to treat, personally, I think ideally patients would consider a clinical trial at the 1st suspicion of a glioma, before the 1st surgery. Most brain tumor surgeries are still done by non-specialists, tumor thrown away after diagnosis #BTSM |
| National Brain Tumor Society @NBTStweets RT @KMJtravels: @BTSMchat T2: @BTSMchat T2: everyone’s pathology is so different and there’s new findings coming every week so I think it needs to be ongoing discussions with your care team #BTSM |
| Guy Lipof - גיא @Project2Program @BTSMchat T2 - At recurrence, we had time to research options as we were planning surgery. One of the great things of going to a tertiary cancer care center is how they use Tumor Boards for weighing options. For recurrence, having a broad care team is important. #BTSM |
| Victoria @V_BBurns @BTSMchat T2: Discussion should start from the very beginning, & the patient should be learning from their treatment team. This would hopefully include multiple people with an interest/insight into clinical trials available. Other patients are also often a resource for info! 🧠 #BTSM |
| Lisa O'Leary @lisaoleary524 @md_vyshak @BTSMchat Overwhelming, possibly - but definitely welcomed when going with SOC may disqualify people from trials! I would have loved to have heard about it. I did my own research and was much more overwhelmed trying to figure it out on my own. #BTSM |
| Flemming Rasmussen @fgrazz T2 // Lots of trust needs to be there btwn patient and Dr/medical support team. At times, a trial is an extremely tough choice #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @Project2Program @BTSMchat @MDABrainSpine Great that you ended up at @MDABrainSpine! When I was there as a fellow, I was shocked to find out that most brain tumors in Houston were *not* operated on at MD Anderson. Not that there aren't other great docs out there, but highlights that most patients don't shop around #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T2 A: I have an LGG (low grade glioma), and had 1 recurrence. No one talked w/me about clinical trials at diagnosis, or at recurrence. I believe the thinking was "do another surgery, add more Temodar." #BTSM <-- Forgot hashtag earlier 🤦♀️ |
| OurBrainBank @ourbrainbank @md_vyshak @BTSMchat T2 // Good point but many patients and/or care givers go google even if discouraged not to. Perhaps sol. lies in having good, easy-to-understand trial info available online as well as in person. #btsm |
| Barb Toof @Btoof @Sabine_NJ @BTSMchat Agree but it truly is overwhelming at times. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @adamhayden @BTSMchat I could tweet for an hour about this and this alone. Seems like such a simple thing, but hard to get that information out before people need it! #BTSM |
| Katie Mang @KatieMang Same. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T2 B: My current NO has never talked with me about clinical trials. Is it because I am doing well and there is no need to bring it up? Is it because I am "The Liz Army" and she assumes I just know ALL THE THINGS? I find it interesting there is more study of LGG. 🤔 #BTSM |
| Victoria @V_BBurns @TheLizArmy @BTSMchat While many of us (including me) say, “the discussion should be had with every patient and from the very beginning”...your experience is the norm still. It’s getting better, but these important discussions aren’t happening often enough. #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T2: Determining candidacy for one trial and trying to pick between options is not easy. This has to be treatment team driven. One should be frank in asking is there a trial at this institution I would be a candidate for and all follow-up questions that arise from it #btsm |
| Liz Salmi @TheLizArmy @MLCotcher This could be the first Sir Francis Bacon shoutout in the history of #BTSM. |
| OurBrainBank @ourbrainbank @KatieMang @BTSMchat T2// yes and no - many people w BT don't see an NO regularly. So we need excellent online info and advocacy groups also. This can help connect patients to share thoughts on trials plus support #btsm |
 | Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1: every newly diagnosed pt should have trial opportunities.... sadly it doesn’t happen for most brain tumor pts due to access & funding #btsm |
| Liz Salmi @TheLizArmy RT @ourbrainbank: T2 Such a critical point. How can we get word out to non-specialist surgeons? Without tumor sample left patients post surgery left in v tricky spot #btsm |
| Claire Snyman @clairehsnyman So true and seems to be an observation that is changing with time #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat From any team member: rad onc, med onc, neuro-onc. #btsm. Trials as possibility should be mentioned even if there are no current trials #btsm |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T2: Not only should trials be part of discussion upfront, at recurrence: there is no standard approach. Here, trials are critical! We spend a lot of time at our tumor board trying to figure out the right approach (most often a trial) for each recurrence scenario #btsm |
| Guy Lipof - גיא @Project2Program @EKNduom @BTSMchat @MDABrainSpine @MDABrainSpine has been terrific. Our tough decision was relocating to the UK for 5 years. Fortunately, our NO recommended a NO in London who we loved. A few years after our return, Susie had a recurrence. So we were blessed being close to MDA again. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: one more soapbox... Trials for low grade tumors or rare tumors take forever to complete & cost a ton of money. There are not many researchers who want to spend an entire career doing/ championing 1-2 trials. This could be helped by more teamwork!! #btsm |
| Liz Salmi @TheLizArmy Hey @theABTA @NBTStweets @theIBTA: Are you listening? #BTSM 👇 |
| OurBrainBank @ourbrainbank @BTSMchat T3 // Go where the patients are. With messages - language, images - they respond to. Some on twitter, some facebook etc. And facilitate patient-clinician interaction. #BTSM |
| National Brain Tumor Society @NBTStweets @BTSMchat Engaging with trustworthy sources in the #btsm comminity. @BTSMchat for example. Also @NIHBrainTumor and @theNCI are excellent. |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: I feel like I also have to say that not all clinical trials are good quality. To me, it is not enough to say “offer a trial.” Offer an excellent clinical trial that asks a very important question. Use therapies w good preclinical data. It is hard though! #btsm |
| Liz Salmi @TheLizArmy @sean_sachdev @BTSMchat Speaking of tumor boards: I have always wondered what a tumor board is like, so I asked a local #neuropath if I could "go to" a tumor board meeting with her and she said, "Yes!" She was surprised I was interested, and I was like, "How could I not be interested?!" #BTSM |
 | Malnati Brain Tumor Institute at Northwestern @BrainTumorInst RT @sean_sachdev: @BTSMchat T1 (2): @BTSMchat T1 (2): A match of trial & pt benefits both -- a specific intervention suited to the lesion/tumor may be effective - simultaneously allowing the study to reach a conclusion which would ultimately affect how everyone is treated. Every standard of care started as a trial! #btsm |
| YoChing @YoChing2 @sean_sachdev @BTSMchat And if you’re in a major metropolitan area or can easily travel, ie, can look at trials from other institutions - then it can be even tougher to prioritize! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @ourbrainbank: @BTSMchat T3 // Go where the patients are. With messages - language, images - they respond to. Some on twitter, some facebook etc. And facilitate patient-clinician interaction. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @TheLizArmy @BTSMchat I don't often discuss clinical trials for patients that are stable in follow-up. Mostly, only at recurrence or on demand. Always happy to discuss anything they may have heard of that may help in the future, but I wont typically bring up a trial that they aren't eligible for #btsm |
| Liz Salmi @TheLizArmy @AshleySumrallMD @BTSMchat Is anyone working on a research network specifically for low grade tumors? Is that what I recently saw @NIHBrainTumor @gliomaregistry and @Tsarmstrong01 tweeting about? #BTSM |
 | Cowcharge @Cowcharge @EKNduom @BTSMchat #BTSM I was in an ambulance on the way to my first surgery an hour after the first MRI in the ER when they found my GBM. Hardly time for investigating trials. |
| Malnati Brain Tumor Institute at Northwestern @BrainTumorInst RT @sean_sachdev: @BTSMchat T2: Not only should trials be part of discussion upfront, at recurrence: @BTSMchat T2: Not only should trials be part of discussion upfront, at recurrence: there is no standard approach. Here, trials are critical! We spend a lot of time at our tumor board trying to figure out the right approach (most often a trial) for each recurrence scenario #btsm |
| Kendra K @KMJtravels @BTSMchat T3: Twitter is my main source of tracking the latest research to share with my @SeattleCCA team - and luckily they’re usually already on top of it! #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: use soc media to explain phases of trials. For example, phase I trials are designed to find safe dose. Interesting phase I does not always translate into clinical benefit in pts. This is SO impt w #GBM. #btsm |
| Liz Salmi @TheLizArmy @Cowcharge @EKNduom @BTSMchat 👆 THIS is a common story. How do you ask a neurosurgeon to "hold up a second, buddy" before operating so the patient could talk to a neuro-onc about options before surgery even happens? #BTSM |
| Guy Lipof - גיא @Project2Program @BTSMchat T2 - Understanding exclusion criteria is very important. We declined treatment using Avastin, as it excluded us from #ClinicalTrials we might consider in the future. https://t.co/gCLqroXvp8 includes criteria for patients and advocates to understand. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: Also, there are TONS of preclinical projects in #gbm. Those are (sadly) far off from being clinically relevant. We could use soc media to educate #btsm |
| Liz Salmi @TheLizArmy @adamhayden @NBTStweets @BTSMchat @NIHBrainTumor @theNCI I agree, give that girl a raise, or a bonus vacation day. #BTSM |
| YoChing @YoChing2 @AshleySumrallMD @BTSMchat Yes! Phases AND design - are there multiple arms, is it blinded or unblinded, etc #btsm |
| OurBrainBank @ourbrainbank @BTSMchat T3 // many people head to https://t.co/njXeId3UQk and it's improved, but much still to be done. How abt a patient-clinician joint brainstorm on this one?! #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @Cowcharge @BTSMchat This is part of why this is a difficult conversation. It is an urgent problem. I am in no position to second guess anyone. In my experience, it is very very very rare that glioma surgery is emergent and cannot wait a few days, but not all surgeons tell patients that #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T3: Maybe one starts off by easily/simply reminding patients to "ask" about trials. At our cancer center (@BrainTumorInst @LurieCancer) we have big purple pins (that many physicians/nurses wear) that simply say "ask me about clinical trials" #btsm |
| Lisa O'Leary @lisaoleary524 RT @EKNduom: @Cowcharge @BTSMchat This is part of why this is a difficult conversation. It is an urgent problem. I am in no position to second guess anyone. In my experience, it is very very very rare that glioma surgery is emergent and cannot wait a few days, but not all surgeons tell patients that #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @sean_sachdev: @BTSMchat T3: @BTSMchat T3: Maybe one starts off by easily/simply reminding patients to "ask" about trials. At our cancer center (@BrainTumorInst @LurieCancer) we have big purple pins (that many physicians/nurses wear) that simply say "ask me about clinical trials" #btsm |
| Malnati Brain Tumor Institute at Northwestern @BrainTumorInst RT @sean_sachdev: @BTSMchat T3: @BTSMchat T3: Maybe one starts off by easily/simply reminding patients to "ask" about trials. At our cancer center (@BrainTumorInst @LurieCancer) we have big purple pins (that many physicians/nurses wear) that simply say "ask me about clinical trials" #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T3: ... as for stopping misinformation, I spend a few minutes a day browsing the brain tumor Facebook groups. About 1 in 20 posts is a little whacky, so I read the articles and flag them as misleading content. I am burnt out on being the science cop. #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @Project2Program @BTSMchat https://t.co/O2xdI7PFN0 is an excellent site/resource; can be overwhelming with all that is on the site but certainly something that one use to start a discussion with a physician #btsm |
| Guy Lipof - גיא @Project2Program @ourbrainbank @BTSMchat T3 - I wish https://t.co/E36jj39Cc4 was more user friendly and could be better used by patients to match us with #ClinicalTrials. Its design and function has a lot to be desired, both at the patient and physician point of view. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @TheLizArmy @Cowcharge @BTSMchat I'm deleting more than I'm tweeting because this is such a tricky subject. However, you should be asking your neurosurgeon about their experience with that type of surgery and feel confident about their ability before surgery. I do not take offense to this type of question. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @EKNduom @lisaoleary524 @Cowcharge @BTSMchat This is also a place where it’s really great to have a PCP involved who you trust & see regularly. Never wrong to get that physician involved. They will usually know what Q’s to ask. One MORE reason why adults need primary care docs! #btsm |
| Kendra K @KMJtravels @BTSMchat And pathology- several trials I don’t qualify for just based on markers or lack thereof #btsm |
| Malnati Brain Tumor Institute at Northwestern @BrainTumorInst @BTSMchat A little late tonight, but happy to have been listening for the second half! #btsm |
| Lisa O'Leary @lisaoleary524 RT @Project2Program: @ourbrainbank @BTSMchat T3 - I wish https://t.co/E36jj39Cc4 was more user friendly and could be better used by patients to match us with #ClinicalTrials. Its design and function has a lot to be desired, both at the patient and physician point of view. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T4: The scan would be done or the tissue would come out, and an algorithm would comb their record, read their scan, sequence their tumor and spit out the top 3 most promising trials for them to consider, with contact information #BTSM |
| Liz Salmi @TheLizArmy @EKNduom @Cowcharge @BTSMchat Thank you for thinking hard about this subject and getting the right info to us. @dfarons & I (and many others) are really passionate about this topic: How might we get information out to general neurosurgeons? #BTSM (P.S. @adamhayden & @lisaoleary524: Design challenge??! |
| Lisa O'Leary @lisaoleary524 I'm always up for a challenge - I see a word cloud in our future #BTSM |
| YoChing @YoChing2 @adamhayden @AshleySumrallMD @BTSMchat Honestly it’s kinda the latter. Once you know the toxic dose you can start exploring around just under that for a subset where the drug has activity. #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @AshleySumrallMD @lisaoleary524 @Cowcharge @BTSMchat Thanks for this! Other physicians often know the capabilities and scope of practice of their colleagues. Not a great thing if another physician says, "I had no idea that they treated brain tumor patients." #BTSM |
| National Brain Tumor Society @NBTStweets @adamhayden Thank you! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: @asco is working to make trials have broader eligibility criteria. Include #braintumors #brainmets https://t.co/cubnP8ffin #btsm |
 | 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T1 As early as possible. Some trials require participants who have not had specific treatments. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @EKNduom: @BTSMchat T4: @BTSMchat T4: The scan would be done or the tissue would come out, and an algorithm would comb their record, read their scan, sequence their tumor and spit out the top 3 most promising trials for them to consider, with contact information #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T4: 🧙♀️ Magic wand: Every hospital/organization/clinic would be equipped with patient navigators who specialized in helping "newbies" on getting up to speed on what they need to know--for patients and care partners. Medical school for patients? #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T4: Make it easy to open nationally available trials everywhere, even at smaller centers, assess everyone for candidacy, simplify consent process for the patient #btsm |
| YoChing @YoChing2 @Project2Program @ourbrainbank @BTSMchat Oh https://t.co/4fTTUSP5GG has SO much room for improvement. Impossible to quickly screen for eligibility without reading each and every line item - I wish they’d standardize and make it more searchable. I do this almost every day and it’s such a manual task! #btsm |
| OurBrainBank @ourbrainbank T4 // Yes! plus.... as matter of course the trial should enable all patients to record symptoms etc both to supplement obj measures, but also enable patients to recognize they're mging the disease not just vice versa. Part of therapy #btsm |
| Lisa O'Leary @lisaoleary524 ALL THE YAAAAAAAAAS! (And add for care partners!) #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @EKNduom @BTSMchat Love it 😎#btsm |
| Katie Mang @KatieMang @BTSMchat T4 // Perhaps I am skeptical, but my magic wand would create more trial opportunties. I was shocked to find less trials after initial search, especially past phase 1 and 2 or focused beyond recurrence #btsm |
| Cowcharge @Cowcharge @EKNduom @BTSMchat #BTSM When you see that giant white blob (6.5 cm) you're not thinking about how to be a smart patient. You're crapping your pants. |
| Guy Lipof - גיא @Project2Program @ourbrainbank @BTSMchat T3 - Ideally patients/ physicians should be able to input relevant patient medical details for matching with #ClinicalTrials. Unfortunately, I have yet to see such a solution for glioma. #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T3 Use your sm powers for good! Advertise trials, trail information and get the information out of the dark and into plain language #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: So many Christmas wishes here. More great quality trials. More scientists & clinicians across institutions working TOGETHER. More access to trials in community practices. More $ for research. More research nurses & coordinators. More time in a day! #btsm |
| Liz Salmi @TheLizArmy @lisaoleary524 Thank you! Care partners were mentioned in the sentence before that so I was lumping you in, but yes... medical school for patients AND care partners! #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @TheLizArmy @BTSMchat It was refreshing to see @TheLizArmy on the #SNO2018 panel discussing clinical trials; nothing will improve without patient perspective; stimulated a really great discussion. #btsm |
| Liz Salmi @TheLizArmy @sean_sachdev @EKNduom @BTSMchat Nerds! #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T4 My magic wand would provide free access to trials and breakthroughs. #BTSM |
| Matt Cotcher @MLCotcher T4: The best trial info & discussions should happen with your medical team. The one-size-fits-all approach and quickly defaulting to the SOC, that are borne from systems trying to fit too many appointments into an hour, need to change/disappear. #BTSM |
| Lisa O'Leary @lisaoleary524 @TheLizArmy That's what I meant. You know I can't help myself but make sure we're represented in EVERY SENTENCE. ;) #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy @BTSMchat THIS WOULD BE AMAZING! #btsm |
| Liz Salmi @TheLizArmy There is nothing more true than this statement from @Cowcharge... 👇 #BTSM #patientchat #hcldr |
| OurBrainBank @ourbrainbank @BTSMchat T4 // How about a magic wand to reconfigure clinical trials w patients at center? Eg people w #GBM have median survival of 14 months, much shorter than median time it takes to get a CT from inception to conclusion! #BTSM |
| Malnati Brain Tumor Institute at Northwestern @BrainTumorInst RT @sean_sachdev: @BTSMchat T4: @BTSMchat T4: Make it easy to open nationally available trials everywhere, even at smaller centers, assess everyone for candidacy, simplify consent process for the patient #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Also don't forget to include making them financially accessible! #btsm |
 | Rockets Sean @rockets9394 RT @lisaoleary524: T1: T1: Standard of care prognosis for the most aggressive types of brain tumors is generally abysmal. Clinical trials give hope of prolonged survival. Also to help improve the experience for future diagnosees. #BTSM |
| Malnati Brain Tumor Institute at Northwestern @BrainTumorInst RT @sean_sachdev: @TheLizArmy @BTSMchat It was refreshing to see @TheLizArmy on the #SNO2018 panel discussing clinical trials; nothing will improve without patient perspective; stimulated a really great discussion. #btsm |
| Lisa O'Leary @lisaoleary524 Sending all the love and feels to the entire #BTSM community. Lots of us are available to chat if you need support. The holidays can be especially challenging to navigate. I'm always here, just reach out! |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD Will #STING be the next big thing in #Immunotherapy for cancer? #btsm #bcsm #brainmets #hnscm |
| Liz Salmi @TheLizArmy RT @sean_sachdev: @TheLizArmy @BTSMchat It was refreshing to see @TheLizArmy on the #SNO2018 panel discussing clinical trials; nothing will improve without patient perspective; stimulated a really great discussion. #btsm |
| Rockets Sean @rockets9394 RT @TheLizArmy: @BTSMchat T1: @BTSMchat T1: I USED TO think people would be interested in clinical trials only AFTER exhausting all other treatment options, but I am now learning people should start considering the ability to "qualify" for trials sooner--before starting any treatment. 🤷♀️ #BTSM |
| Guy Lipof - גיא @Project2Program @YoChing2 @ourbrainbank @BTSMchat T3 - I agree regarding https://t.co/UAtxeEYMeh. @IBMWatsonHealth has created a #ClinicalTrial Matching solution for multiple cancers that is in use with @MayoClinic. A significant increase in enrollment has been reported w/ #BreastCancer trials. #BTSM https://t.co/ImwDrs8PYO |
| OurBrainBank @ourbrainbank RT @lisaoleary524: Sending all the love and feels to the entire #BTSM community. Lots of us are available to chat if you need support. The holidays can be especially challenging to navigate. I'm always here, just reach out! |
| Liz Salmi @TheLizArmy @Sabine_NJ @BTSMchat It is being thought about it in some circles! #BTSM @lisaoleary524 |
| Victoria @V_BBurns @BTSMchat T4: my magic wand would include patient education, more involvement from providers (early in), more trial opportunities in general. Accessibility is key. Also, patients and caregivers learning to become advocates/researchers is so important #BTSM |
 | lisa wetherhold @WethLisa RT @TheLizArmy: "Every standard of care started as a trial!" - @sean_sachdev #BTSM #mindblown |
| OurBrainBank @ourbrainbank RT @Project2Program: @YoChing2 @ourbrainbank @BTSMchat T3 - I agree regarding https://t.co/UAtxeEYMeh. @IBMWatsonHealth has created a #ClinicalTrial Matching solution for multiple cancers that is in use with @MayoClinic. A significant increase in enrollment has been reported w/ #BreastCancer trials. #BTSM https://t.co/ImwDrs8PYO |
| Erica Robinson @eleighrobs @BTSMchat @TheLizArmy @CBlotner_ @lisaoleary524 @adamhayden @Sabine_NJ @JeremyPivor Thank you all! This upcoming Sat, December 8th is the @NBTStweets Phoenix Brain Tumor Walk. I'll be there walking with our friends @TeamSamTheLION if anyone is in the area. I love meeting @BTSMchat peeps in real life! Happy holidays! #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @Project2Program @YoChing2 @ourbrainbank @BTSMchat @IBMWatsonHealth @MayoClinic This is excellent; we had a presentation from the Watson team at NW; did not get to this point! #btsm |
| Liz Salmi @TheLizArmy @Project2Program @YoChing2 @ourbrainbank @BTSMchat @IBMWatsonHealth @MayoClinic Is this free for real people (lay folks)? #BTSM |
| Guy Lipof - גיא @Project2Program @sean_sachdev @BTSMchat T4 - With today's connected age, I agree with you completely. We should be able to run #ClinicalTrials with patients who reside far and wide. The democratization of care and research needs to merge. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @VictoriaBBurns: @BTSMchat T4: @BTSMchat T4: my magic wand would include patient education, more involvement from providers (early in), more trial opportunities in general. Accessibility is key. Also, patients and caregivers learning to become advocates/researchers is so important #BTSM |
 | Gustavo Luyo @gdaniel_lp RT @dr_jonathant: Ignoring parotids when designing whole brain RT fields can ➡️ bothersome dry mouth. Nice study, important problem, simple fix. Seems like a no-brainer. #radonc #pallonc #btsm @BhishamCheraMD |
| Guy Lipof - גיא @Project2Program @TheLizArmy @YoChing2 @ourbrainbank @BTSMchat @IBMWatsonHealth @MayoClinic The CTM solution is available to patients of the @MayoClinic. Hopefully we will see other hospitals adopt it. IBM Watson for #Genomics, which supports #Glioblastoma, is available via @QuestDX. #BTSM https://t.co/XXd7XJDuFw |
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