#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | #BTSM chat @BTSMchat Hello everyone! Welcome to the monthly Brain Tumor Social Media tweet chat! Remember to use the hashtag (#BTSM) in order to take part in tonight’s conversation. |
| #BTSM chat @BTSMchat Tonight's chat is about how we, the #BTSM community on Twitter, might play a role in transforming the future of brain tumor care. #goals Twitter is flattening traditional hierarchies in healthcare, and together we have the opportunity and power to do amazing things. https://t.co/gvzXs7eaIM |
 | Lisa O'Leary @lisaoleary524 @MelissaMBlank Welcome! #BTSM |
| Lisa O'Leary @lisaoleary524 What she said. 👇👇👇 |
 | Heather 🇺🇸 @ZHeatherChamp Hi. Watching @lostinspacetv will prob be lurking tonight. I am living with 2 rare brain tumors called Gangliocytoma. #btsm |
| #BTSM chat @BTSMchat Running this orange chat bubble tonight is @TheLizArmy: curious person, patient informatician and researcher, and person living w/grade II astrocytoma in Sacramento, CA. The #BTSM organizing team also includes @adamhayden @Sabine_NJ @lisaoleary524 @CBlotner_ & @JeremyPivor. |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ You can expect increased tweet activity from me between now at 10 pm ET - I am participating in the monthly #BTSM (brain tumor social media) tweet chat. |
 | Charlie Blotner @CBlotner_ @MelissaMBlank We're glad you're here - everyone is welcome in our cafeteria - no bullies allowed!🙂🥨 #btsm |
| #BTSM chat @BTSMchat Let’s start off with introductions! What’s your name? Where are you based? Who are you? Why are you here? Tweet #BTSM if you’re only here to listen. Welcome everyone! https://t.co/QmSL1WhYdM |
 | Jared Rubenstein, MD @DrJRubenstein @BTSMchat Hey! Jared here. I love this idea! Twitter is such a great way to #restorethepatientvoice in healthcare. #BTSM |
 | St_Molly_AgentofChaos @Lifeiskitsch Reiterating @Sabine_NJ. From 9-10pm EST tonight I’ll be #BTSM chatting. Lots of #braintumor gabs. You’ve been warned. |
 | I Live Now Rachel 💎 @KickBrainTumors Multitasking at the moment. I will be listening in. Excellent topic! ~Rachel @HYHUTriangle #BTSM |
 | Melissa Blank @MelissaMBlank @CBlotner_ that is good to know! I need bullies like I need another hole in my head 😂 #btsm |
 | Liz Salmi @TheLizArmy @BTSMchat @adamhayden @Sabine_NJ @lisaoleary524 @CBlotner_ @JeremyPivor That's me up there! #btsm https://t.co/j589DHioNt |
 | 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat Hi! I am Julia, living in Brisbane, Australia. I am a patient, researcher and patient advocate. #BTSM |
| #BTSM chat @BTSMchat For those new to #BTSM, every 1st Sunday we gather for a live chat at 9pm ET to discuss interesting and timely topics that are meaningful to people facing and caring for those dealing with brain tumors. |
| Lisa O'Leary @lisaoleary524 Lisa here, from San Luis Obispo, CA. Former care partner to my late husband Patrick who died of GBM 7/2015. Now, passionate advocate for the brain tumor community and improving quality of life for patients and their loved ones. (Also sick, trying not to fall asleep! 🤧) #BTSM |
 | 𝕗𝕤𝕔𝕙𝕞𝕟𝕟 @fschmnn @BTSMchat #btsm Rudy here. In Knoxville with an astrocytoma and trying to figure out how I can make a better world out of my own bucket of crap. |
 | Inspire @InspireIsHealth RT @BTSMchat: Let’s start off with introductions! What’s your name? Where are you based? Who are you? Why are you here? Tweet #BTSM if you’re only here to listen. Welcome everyone! https://t.co/QmSL1WhYdM |
| Jared Rubenstein, MD @DrJRubenstein @BTSMchat Oh and I’m a peds palliative care doc in Houston. Here to learn from you all and connect! #BTSM |
 | Erica Robinson @eleighrobs @BTSMchat Happy New Year everyone! Erica here, from Boston. @NBTStweets @NewEnglandNBTS advocate, survivor, team captain. Always here to learn something new, connect with others in the community. #BTSM |
| #BTSM chat @BTSMchat #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community & is not owned by any organization. Our chat lasts 1hr. It's designed to connect & educate the brain tumor community, develop our voices, connect patients/loved ones & spur action. |
 | Lisa Joerling @LisaJaayyy @BTSMchat Wont make it tonight! Will catch up on the chat later. My next MRI is Friday! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Hi. Molly. Metro-Detroit, Michigan. I am a human. With Anaplastic Astrocytoma. Diagnosed in October 2016. Currently stable. Also currently reading a book & didnt want to put it down. But here I am. #BTSM |
| #BTSM chat @BTSMchat While intros continue, let’s go over some #BTSM tweet chat guidelines: We assume all tweets during #BTSM express your own personal opinions and not those of an employer or organization (unless specified). |
| #BTSM chat @BTSMchat Watch this orange #BTSM avatar for the 4 topics we’ll be discussing. Topics are labeled T1, T2, T3 and T4. Please label your answers with T1, T2, etc to make conversation easier to follow. |
| Inspire @InspireIsHealth @BTSMchat Hello to the #btsm community, John Novack here from Inspire. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Hi Everyone! I'm Sabine, diagnosed with AA3 in May 2014. Living in NJ. I'm one of the @BTSMchat team members, amongst other patient advocacy/advisory "jobs" that I have;-) Looking forward to a great 2020! #btsm |
 | Kate @Kate_chain excited to see what conversations kick off tonight with #BTSM ! I'm very passionate about improving healthcare operations for orphan diseases such as #glioblastoma . These edge cases at hospitals surface operational gaps that I've observed in my experience as a patient advocate |
| Charlie Blotner @CBlotner_ @BTSMchat Hi all! Charlie in Seattle, here. I'm 7+ yrs out from awake cranio for grade II astrocytoma in left insula, work as a hospice social worker, and never turn down an opportunity to see pictures of dogs if you happen to have one! #btsm |
| Lisa O'Leary @lisaoleary524 @LisaJaayyy @BTSMchat Sending stable vibes for your MRI! #BTSM |
 | Alireza Mansouri @DrAMansouri @BTSMchat Hi everyone, happy 2020! #BTSM Looking forward to tonight's disussion |
| Liz Salmi @TheLizArmy @DrJRubenstein @BTSMchat So glad you're here, Jared! Hey everybody: Jared is the best and you should all follow him on Twitter. #btsm |
| #BTSM chat @BTSMchat Dissenting comments and opposing views are perfectly acceptable. Personal attacks, vulgar language and negative tweets directed at an individual are not tolerated. #BTSM |
| Lisa O'Leary @lisaoleary524 @teaminspire @BTSMchat Hey John! :) #BTSM |
| Liz Salmi @TheLizArmy @fschmnn @BTSMchat Sounds like you have come to the right place, my friend! #btsm |
 | KateWhy @KattyBatty1 @BTSMchat #btsm Listening tonight, NJ parent of teen who had his 2nd surgery this past summer for a brainstem juvenile pilocytic astrocytoma. |
| St_Molly_AgentofChaos @Lifeiskitsch @SeriFeliciano @BTSMchat Welcome to the cool kids club! #BTSM |
| #BTSM chat @BTSMchat While we are waiting for everyone to join, take a moment to LIKE the tweet below from @adamhayden. Adam gave an amazing talk last month at @endwellSF and it is finally online for everyone to watch! #BTSM #EndWell19 https://t.co/pIa8HKqNis |
| Erica Robinson @eleighrobs @MelissaMBlank Welcome! I use the " like another hold in my head" reference, as well! Usually, a shopping reference. #BTSM New shoes, cosmetics...like another hole in my head. |
| Melissa Blank @MelissaMBlank I'm Melissa, I have #glioblastoma, but it doesn't have me. Im here bc I'm interested in the #btsm community. I started a blog: https://t.co/ssSYQqOrBj as a way to not feel so alone, but also bc I didn't want to hide behind my disease. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @KattyBatty1 @BTSMchat Hi Kate, where in NJ are you located? #btsm I'm in Morris County. |
 | Wayne Morgan @WayneMorganSr @BTSMchat I'm Wayne in Mississippi. 1/9/2019 my wife was diagnosed with Grade 4 GBM. #BTSM |
| Liz Salmi @TheLizArmy @Kate_chain So glad you are here, Kate! #btsm |
| Liz Salmi @TheLizArmy @LisaJaayyy @BTSMchat Please let us know how it goes and send a #MRIselfie! #btsm |
 | Vaxed, mask-wearing globetrotter 🇰🇾🇺🇸🇬🇧 @bermudababe76 @BTSMchat I was a care partner for my mom, who died from GBM in Oct 2018. I’ll try to be available. I’ve had a long day and may end up going to bed earlier than normal! 😂 I feel so old when I’m like this. #BTSM |
| #BTSM chat @BTSMchat Let’s get ready for T1 in just 1 minute. #BTSM |
| Liz Salmi @TheLizArmy @KattyBatty1 @BTSMchat Always glad to have you here, Kate. #btsm |
| Melissa Blank @MelissaMBlank @eleighrobs some people really don't like that I make dark jokes about it. I think its funny, and what else am I'm gonna do, cry about it? #BTSM |
| #BTSM chat @BTSMchat 💥💥💥 T1: How did you hear about #BTSM? When & why did you decide to join this community on Twitter? 💥💥💥 |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @DrJRubenstein @BTSMchat Hi Dr. Rubenstein! I just left Houston yesterday! Bummer I forgot you are in TX. Will pm you before my next visit- would love to meet you IRL. #btsm |
 | Steve Blank 🌻 @blank_steve First time here, I am husband of @MelissaMBlank #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @MelissaMBlank Huzzah! Welcome to the club! ❤️🧠✨ #btsm |
 | Katie Mang @KatieMang Hello! I am carepartner to my husband with GBM. We live in Cleveland Area. listening in on topic with great interest #BTSM |
| Liz Salmi @TheLizArmy @Lifeiskitsch @SeriFeliciano @BTSMchat For reals. FINALLY you are here, Jose. Welcome. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @SeriFeliciano @BTSMchat Welcome! Would love to hear more about your research! #btsm |
| Jared Rubenstein, MD @DrJRubenstein @Sabine_NJ @BTSMchat Agreed! That would be great! #BTSM |
| Liz Salmi @TheLizArmy @MelissaMBlank Melissa! Thank you so much for blogging! I was afraid it was becoming a lost art form. Welcome to #BTSM! |
| Charlie Blotner @CBlotner_ @WayneMorganSr @BTSMchat Welcome, Wayne. It sounds like it will be one year since that initial diagnosis in just a few days for your wife. Is that stirring up any feelings for the two of you? #btsm |
| Melissa Blank @MelissaMBlank Husband AND #badasscaregiver! |
| Kate @Kate_chain Hi I'm Kate! I split my time between SF/LA/CLE. High tech analytics background looking to operationalize data as a product to improve healthcare and research. Visionary who believes blockchain solutions could be leveraged for data accessibility and monetization #BTSM |
| Vaxed, mask-wearing globetrotter 🇰🇾🇺🇸🇬🇧 @bermudababe76 @BTSMchat T1 #BTSM I’m honestly not sure where I found BTSM but I’m glad I did. I don’t always participate in chats but I do read things that are posted on these chats. I joined because I want to make sure other people don’t go what my mom & my family went through with her brain cancer. |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T1A1 I found #Btsm after spending a lot of time tweeting on #BrainTumorThursday This community has been a blessing |
| Lisa O'Leary @lisaoleary524 T1: I first learned about #BTSM attending the @NBTStweets advocacy event called Head to the Hill. I met @TheLizArmy at the California advocate's table and the rest is history. My husband had already passed more than a year earlier. I wish I had found it while he was in tx. |
| Liz Salmi @TheLizArmy @blank_steve @MelissaMBlank So great to have care partners join us! @MelissaMBlank sounds like a lucky gal. Make sure to connect with @lisaoleary524--our resident care partner for #BTSM. |
| Heather 🇺🇸 @ZHeatherChamp A1: I had connected with @CBlotner_ many moons ago. I thought/hoped to have helped in the early days in some way. #BTSM |
| Jared Rubenstein, MD @DrJRubenstein T1- First connected with #BTSM community through @TheLizArmy. Keep coming back for the engaged and activated community. |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1: You guys! I don’t remember! Was it a Facebook group? Or was it Twitter? Maybe @TheLizArmy found me? I don’t remember! I must’ve used a hashtag or something since I’ve always social media-ed all the places & all the life topics! 🤷♀️🧠 #BTSM |
| Melissa Blank @MelissaMBlank @fitwithjanice Aww, thank you! It's a hodge podge of randomness and book stuff. I try not to make it too cancery #btsm |
| Alireza Mansouri @DrAMansouri @BTSMchat Head to the Hill 2018. Very inspiring to see the passion many people had advocating for more support for brain tumor research! #BTSM |
| Lisa O'Leary @lisaoleary524 @blank_steve @TheLizArmy @MelissaMBlank I'm here at any time to talk, listen, etc etc! #BTSM |
 | Low Grade Glioma Registry @gliomaregistry He exists! |
| Melissa Blank @MelissaMBlank @TheLizArmy It might be a dying form, but before my diagnosis I taught college level English and composition. If I'm not writing, I'm not me. #btsm #blogger |
| Liz Salmi @TheLizArmy @BTSMchat T1. I heard about #BTSM because, *cough*, I was there the night we made it up. We stole the idea for #BTSM from #BCSM (breast cancer) and #HCSM. S/O to @stales & @danamlewis (and many others). The #BTSM acronym was the idea of @uvmer. @CBlotner_ hosted the 1st #BTSM chat! https://t.co/JRCMbDvf8Q |
| Low Grade Glioma Registry @gliomaregistry Has a nice manuscript about #btsm pending! |
| Katie Mang @KatieMang @BTSMchat T1 I found out about #btsm late at night when my husband was in hospital having crainiotomy looking for any non-medical text to learn about brain tumors. Jumped into convo after GBM dx on 6/2019. I work in the #endalz community and knew how helpful social connections can be. |
| #BTSM chat @BTSMchat So many great stories flooding in! Keep them coming! #BTSM |
| Erica Robinson @eleighrobs @BTSMchat T1. I got involved with @NBTStweets and someone mentioned this platform. I did a "test run" on a chat that was during the week one time. I figured out I could handle how to respond. SO glad I did! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @fschmnn @BTSMchat @KickBrainTumors It’s tough for us EST folks! 9pm might as well be late-night. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat @TheLizArmy who was my @ImermanAngels mentor introduced me. She said: "Twitter is a great way to get involved in the brain tumor community [...] Add the hashtag #BTSM to connect with the Brain Tumor Social Media community and you will find lots of love." She was so right! #btsm |
| #BTSM chat @BTSMchat An amazing T1 discussion. Let’s get ready for T2 in just 1 minute. #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat @stales @danamlewis @uvmer @CBlotner_ T1b. I joined/helped create the #BTSM community because we needed it. The fellow patients & care partners I was meeting on Twitter were a different style of patient advocate community and I felt like "these are my people." #BTSM has helped me form amazing friendships. |
| #BTSM chat @BTSMchat We are all so grateful to you @TheLizArmy and @CBlotner_ for rolling this out! #BTSM |
| #BTSM chat @BTSMchat @WayneMorganSr @CBlotner_ Thinking of you both, Wayne. #BTSM |
| Melissa Blank @MelissaMBlank T1: I stumbled upon the hashtag from following someone in the community. I can't remember who, but I'll blame That on brain surgery! #BTSM |
| Alireza Mansouri @DrAMansouri RT @TheLizArmy: @BTSMchat @stales @danamlewis @uvmer @CBlotner_ T1b. I joined/helped create the #BTSM community because we needed it. The fellow patients & care partners I was meeting on Twitter were a different style of patient advocate community and I felt like "these are my people." #BTSM has helped me form amazing friendships. |
 | Ellie Spalding @MarySpalding @BTSMchat I’m Ellie, based in Boulder, I’m 9.5. years out from surgery for juvenile pilocytic astrocytoma. MRI in July showed early signs of recurrence so back in the yearly MRI cycle. I work in biotech doing drug discovery research for tumors! #btsm |
| Alireza Mansouri @DrAMansouri @TheLizArmy @BTSMchat @stales @danamlewis @uvmer @CBlotner_ so glad you did! #BTSM |
| Erica Robinson @eleighrobs @TheLizArmy @BTSMchat @stales @danamlewis @uvmer @CBlotner_ T1. #BTSM https://t.co/Eoase5ldVi |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1, Part Deux: Since I enjoy all social medias & need outlets & input, #BTSM chats have been hugely helpful. Helped me find more people, makes diagnosis a little less lonely/less scary. More like, feeling part of something bigger. Introduced me to more orgs\events\roles. #BTSM |
| Charlie Blotner @CBlotner_ @ZHeatherChamp Absolutely, Heather - you and @TheLizArmy were the first brain tumor folks to respond to my messages out in the Twitter-dark back in September 2012 leading up to/after my surgery. #btsm |
| #BTSM chat @BTSMchat 🏆🏆🏆 T2: What are some of your favorite aspects of being part of the #BTSM community? Share a story of how #BTSM helped you learn something new, form a connection, or make a friend. 🏆🏆🏆 |
| Kate @Kate_chain @BTSMchat T1A1: I started writing about the grave biases in medicine I have witnessed related to #GBM #glioblastoma and found this community on Twitter via hashtags on other posts 💯🧠 #BTSM if anyone is interested in reading it when I'm done writing let me know! Considering a documentary |
 | ༻꧂ Oma Hamou nee' McConnell ༻꧂ @Oma_Hamou RT @KickBrainTumors: Multitasking at the moment. I will be listening in. Excellent topic! ~Rachel @HYHUTriangle #BTSM |
 | Sabin Motwani @sabinbmotwanimd A1. I found out about #btsm from @subatomicdoc who introduced me to @TheLizArmy and @CBlotner_ #BTSM |
| Liz Salmi @TheLizArmy @bermudababe76 @BTSMchat Looks like you are participating in a chat right now! 😁 I am glad you are. #btsm |
| Liz Salmi @TheLizArmy RT @lisaoleary524: T1: T1: I first learned about #BTSM attending the @NBTStweets advocacy event called Head to the Hill. I met @TheLizArmy at the California advocate's table and the rest is history. My husband had already passed more than a year earlier. I wish I had found it while he was in tx. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat @TheLizArmy @ImermanAngels In 2017, Liz asked me if I wanted to become a member of the @BTSM organizer team. I moderated the first #BTSM chat one year ago. |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat You are going to make me do a deep dive analysis into twitter analytics, aren't you? #btsm |
 | Power Beyond Psoriasis @Psoriasischamp RT @BTSMchat: Let’s start off with introductions! What’s your name? Where are you based? Who are you? Why are you here? Tweet #BTSM if you’re only here to listen. Welcome everyone! https://t.co/QmSL1WhYdM |
| Power Beyond Psoriasis @Psoriasischamp RT @BTSMchat: #BTSM tweet chat is back: #BTSM tweet chat is back: Sunday, January 5! 🗓️ This month we're discussing: 👉What #BTSM wants to strive for in 2020 👉Whose voices should be included in designing the future of care 👉What brain tumor care might look like by 2030 Set your ⏰ for 6pmPT/9pm ET #braintumor https://t.co/RrPMZsfr1h |
| Power Beyond Psoriasis @Psoriasischamp RT @BTSMchat: SET YOUR TIMERS! ⏰ #BTSM tweet chat is tonight at 6pm Pacific/9pm Eastern. Who are we? #BTSM is a patient & care partner-run Twitter community and is not owned by any organization. Use the hashtag anytime & join us for live tweet chats on the 1st Sunday of each month. |
| Liz Salmi @TheLizArmy @DrAMansouri @BTSMchat I didn't realize you were at Head to the Hill in 2018! That is so cool. #btsm |
| #BTSM chat @BTSMchat T2: #BTSM has shown me that I am not alone in this difficult and painful experience. It has given me the voice that I struggled to find. I have made so many friends, many of whom I can be more open with than those in my "real life." I'm so grateful to be a part of it. |
| Charlie Blotner @CBlotner_ @BTSMchat Throwback to what I believe was our first news coverage about #btsm in 2013 after creating the chat and moderating it ever since with @TheLizArmy! It has been wonderful to have more folks involved in recent years re: moderating, creating chat topics, etc. https://t.co/1ij3c1NhhQ |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T2A2 I love being able to make contact with others around the world who are or have been in the same place. I have not yet had the pleasure of meeting any #BTSM chat people in person but I am sure it will happen |
| Alireza Mansouri @DrAMansouri @TheLizArmy @BTSMchat That was also when I decided to join Twitter! #BTSM |
| KateWhy @KattyBatty1 @BTSMchat T2: #BTSM —i am learning all the time, from all of you, how adults handle brain tumors. To kind of use as a guideline as the teen gets older and becomes more independent. |
| St_Molly_AgentofChaos @Lifeiskitsch T2: One of the coolest bits was learning about Head to the Hill in Washington, DC. So many BTSM advocates WERE PRESENT & I wanted to go, too. So I asked my neuro onc @JimSnyderDO about it. So he went. & the next year patients at HF could get a grant to attend/participate! #BTSM https://t.co/Hvl0fqDz9m |
| Charlie Blotner @CBlotner_ @Kate_chain @BTSMchat Would absolutely love to read when you get the chance. Feel free to DM for email/share yours and I'll reach out. Thanks! #btsm |
| Lisa O'Leary @lisaoleary524 T2: #BTSM has shown me that I am not alone in this difficult and painful experience. It has given me the voice that I struggled to find. I have made so many friends, many of whom I can be more open with than those in my "real life." I'm so grateful to be a part of it. |
| Liz Salmi @TheLizArmy @BTSMchat T2: My favorite part of #BTSM are the connections I have made with other advocates--people I text w/EVERY DAY. Over the years a few of us BT advocates have started working in healthcare/research/advocacy and are noticing interesting connections among the professions. |
| Vaxed, mask-wearing globetrotter 🇰🇾🇺🇸🇬🇧 @bermudababe76 @BTSMchat I wish I found #BTSM while my mom was going through cancer. I think it would have helped us feel like we weren’t alone. While everyone has a different experience, knowing we are all in the same proverbial boat would have been helpful! I wouldn’t have felt so alone in the moment |
| Power Beyond Psoriasis @Psoriasischamp RT @BraveBosom: Let’s try something new. There are a ton of ePatients out there changing healthcare and saving lives through #peersupport. Who do we need to follow out there in 2020? Please reply w/ recommendations! #medx #hcsm #btsm #medtwitter @BeLikeLight |
 | Dr. Vicky Forster @vickyyyf @BTSMchat I'm late, sorry! T1: I'm not actually sure, I think saw tweets by @CBlotner_ and checked out the hashtag! #btsm https://t.co/6yym5a0vZa |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T2: I made many friends through the #BTSM community, some of whom I've met IRL! I like that #BTSM connects patients with clinicians, researchers, etc. And that it inspires to think and talk about topics that other non-#BTSM people don't like to talk about. |
| #BTSM chat @BTSMchat @vickyyyf @CBlotner_ Welcome! Better late than never! #BTSM |
| Erica Robinson @eleighrobs @BTSMchat T2. There are so many things I have learned, but one that stands out; I used to say "lost their battle". Now I say, "lost their life". I never meant that someone didn't fight hard enough. #BTSM |
| Melissa Blank @MelissaMBlank @BTSMchat T2: at first diagnosis, felt shock & isolation, fear, & more fear. The community helped. Plus getting to know @Charlie_Lilleyy as a caregiver for her dad (and read HIS blog) helped immensely. We may be across the pond from each other, but we understand each other #BTSM |
| KateWhy @KattyBatty1 @Sabine_NJ @BTSMchat Small world—We are also! Long Hill Township; not far from the Swamp. #BTSM |
 | Misha Santa Barbara 🍑 🇨🇿 @mishasb Hi all, 2 years from leptomeningeal oligodendroglioma surgery, so far so good, in Atlanta, 45 #BTSM - |
| Charlie Blotner @CBlotner_ @TheLizArmy @BTSMchat T2 - Same. re: what @TheLizArmy said. The world has opened on up because of Twitter and #btsm. So many incredible people, projects, and opportunities. |
| Sabin Motwani @sabinbmotwanimd A2. I'm grateful to the #BTSM community because it's a great forum of collaboration and integration of patients, pt advocates, clinicians, researchers, radiologists, pathologists, and people who are inherently just curious. Met @AshleySumrallMD and @SeanSachdevMD in here. |
| #BTSM chat @BTSMchat RT @eleighrobs: @BTSMchat T2. There are so many things I have learned, but one that stands out; I used to say "lost their battle". Now I say, "lost their life". I never meant that someone didn't fight hard enough. #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T2b: My favorite #BTSM story is meeting my Twitter friend @SeanSachdevMD IRL at @ASCO conference in 2017! Sean showed me all around the conference and explained brain radiation in amazing detail. We met up again at the @NeuroOnc conference, and a few more times after. He's rad. |
| I Live Now Rachel 💎 @KickBrainTumors So sweet😊 |
| Alireza Mansouri @DrAMansouri @Lifeiskitsch @JimSnyderDO Makes finding common ground and shared interests easier, so it is faster to connect when we meet in real life. e.g. #SNO2019 with @TheLizArmy. Opens doors for collaborations too! #BTSM |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @BTSMchat @SeanSachdevMD @ASCO @NeuroOnc I second that! Meeting @SeanSachdevMD at @NeuroOnc SNO conference a few years back was a highlight! #BTSM |
| #BTSM chat @BTSMchat Hold on, we have something in our eyes, don't mind us... 😪😊😍 #btsm |
| #BTSM chat @BTSMchat PSA: If you are here tonight to just listen, please tweet “#BTSM” so we know you’re in the audience. |
| Charlie Blotner @CBlotner_ @MarySpalding @BTSMchat What a neat career given your back story. I imagine your co-workers have had quite a bit to weigh in with the recent potential recurrence. Hopefully your job and career have been able to be a resource for information 🤓 #btsm |
| Liz Salmi @TheLizArmy RT @Lifeiskitsch: T2: T2: One of the coolest bits was learning about Head to the Hill in Washington, DC. So many BTSM advocates WERE PRESENT & I wanted to go, too. So I asked my neuro onc @JimSnyderDO about it. So he went. & the next year patients at HF could get a grant to attend/participate! #BTSM https://t.co/Hvl0fqDz9m |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BTSMchat One of my all time favorites so far is accidentally mistakenly typing out @TheTimMcGraw’s name as “@garthbrooks” & then mixing up @bjmillermd & typing out “@bjnovak.” Because my name scrambles & word problems are legit brain issues & also HILARIOUS. You have texting proof! #BTSM |
| Liz Salmi @TheLizArmy @Lifeiskitsch @JimSnyderDO This is one of my favorite things ever! The both of you are incredible. #btsm |
| #BTSM chat @BTSMchat #BTSM IRL connections like this are the best! |
| St_Molly_AgentofChaos @Lifeiskitsch @vickyyyf @BTSMchat @adamhayden @lisaoleary524 @CBlotner_ @TheLizArmy Btw, I’m coming to Toronto one of these days. I have old friends there & it’s not a long drive! #BTSM |
| Liz Salmi @TheLizArmy RT @lisaoleary524: T2: T2: #BTSM has shown me that I am not alone in this difficult and painful experience. It has given me the voice that I struggled to find. I have made so many friends, many of whom I can be more open with than those in my "real life." I'm so grateful to be a part of it. |
| Erica Robinson @eleighrobs @BTSMchat I love it when IRL connections happen! #BTSM |
 | Jenna J @JennaJohnsonRD @BTSMchat Hi there! I’m Jenna and a 2x schwannoma survivor (1993 & 2016). I’ve only recently found #BTSM thru med Twitter (I work in healthcare.) |
| St_Molly_AgentofChaos @Lifeiskitsch RT @Sabine_NJ: @BTSMchat T2: @BTSMchat T2: I made many friends through the #BTSM community, some of whom I've met IRL! I like that #BTSM connects patients with clinicians, researchers, etc. And that it inspires to think and talk about topics that other non-#BTSM people don't like to talk about. |
| I Live Now Rachel 💎 @KickBrainTumors T2: I remember when joined the brain tumor community for #braintumorthursday 2010 after brain surgery, I couldn’t even type to tweet. @TumorWarrior Lou was a good friend who taught me the ropes. Lots of love in the community! #btsm Real talk. |
| Liz Salmi @TheLizArmy @fschmnn @Ailuj_Nostrebor @BTSMchat @KickBrainTumors You met @KickBrainTumors??!!!! I thought she was a myth, like a unicorn! Amazing. So glad you two connected. #btsm |
| Liz Salmi @TheLizArmy @mishasb Welcome, Misha! Is that a rare tumor type? We could learn a lot from you. #btsm |
| Heather 🇺🇸 @ZHeatherChamp A2: Although no one reads them, it’s nice to include #btsm in my tweets when I’m mentally preparing for my EEG and my next scan. (I’m included in something and not alone.) #Scanxiety |
 | nancy @uvmer Had been gathering folks together through #BrainTumorThursday prior |
| I Live Now Rachel 💎 @KickBrainTumors 🤣😂Oh No |
| #BTSM chat @BTSMchat 🔮🔮🔮 T3: What should brain tumor care look like by 2030? #BTSM 🔮🔮🔮 |
| St_Molly_AgentofChaos @Lifeiskitsch @eleighrobs @BTSMchat I have met so many of you over the last 3 years, so as crappy as brain tumors are— I made so many friends. Aside: I think @Sabine_NJ is the first person I met in real life from #BTSM chats. I met her at 2017 @theABTA conference in Chicago. That was my first big event! #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T2. I'd also add that seeing other folks tweet about scanxiety, caregivers talk about the energy it takes/took for something, and learning about the RN/MD perspective within neuro onc has been top notch. The content available is absolutely incredible on here. #btsm |
| Liz Salmi @TheLizArmy @DrAMansouri @Lifeiskitsch @JimSnyderDO We are totally going to do that one analysis that I can't talk about right now because #spoilers. But it is going to happen! #BTSM CC @adamhayden |
| Vaxed, mask-wearing globetrotter 🇰🇾🇺🇸🇬🇧 @bermudababe76 @BTSMchat #BTSM T2 Also, I live in the Cayman Islands & there is no support/community here for this. My mom lived in Baltimore. I didn’t have support I needed in either place so having an online forum no matter where I was would have been helpful!!! Love that this is accessible anywhere! |
 | Josemari Feliciano @jmtfeliciano @BTSMchat I love the camaraderie within #BTSM especially when the monthly topic is sensitive in nature Seeing all the photos when patients, survivors finally meet in person + the obvious bonds they have previously cultivated online are also great |
| #BTSM chat @BTSMchat @lisaoleary524 @TheLizArmy @SeanSachdevMD @ASCO @NeuroOnc It's official, @SeanSachdevMD is awesome. #btsm |
| Heather 🇺🇸 @ZHeatherChamp 2012 was a year after my crani’s and I was just starting to feel somewhat like a human again. #btsm |
 | Matthew Katz, MD 🟦 @subatomicdoc Good evening! Matt Katz, radiation oncologist. Sorry to be late, I got distracted by a @mindykaling movie #btsm |
| Lisa O'Leary @lisaoleary524 T3 Hopefully, a cure! But if not, at least more patient-centered care that takes quality of life into account for those whose goals are more than just adding to the number of days of life. Oh, and paying attention to care partners. Please and thank you. #BTSM |
| #BTSM chat @BTSMchat @subatomicdoc @mindykaling Welcome, Dr. Katz! #BTSM |
| Sabin Motwani @sabinbmotwanimd A3. I hope we have more medicine that can cross the blood/brain barrier without compromising cognitive function long-term. #BTSM |
| Vaxed, mask-wearing globetrotter 🇰🇾🇺🇸🇬🇧 @bermudababe76 @BTSMchat #BTSM T3 obviously I’d like a cure. I hate to think anyone else has to go through this. Having more communication with the doctors/communication in one place for the care tam would be incredibly helpful. |
| Dr. Vicky Forster @vickyyyf @BTSMchat Okay, I'm going to be bold here: - No *traditional* chemotherapy. None. Super super targeted radiotherapy/proton beam and immunotherapy and/or viral therapy options for all. - Adequate psychosocial support for all people with BTs and their caregivers. #BTSM |
| Alireza Mansouri @DrAMansouri @BTSMchat T3: The perspective of patients and care partners will also be given stronger weight, as an effective management strategy is one that fits in well with an individual's lifestyle and philosophy as well. #BTSM |
| #BTSM chat @BTSMchat We like this idea too! So important. #BTSM |
| Jared Rubenstein, MD @DrJRubenstein @BTSMchat T-3: Care plans that include both curative therapy and palliative care from the point of diagnosis! #BTSM Like peanut butter and chocolate, two great things that work great together. https://t.co/7fljADFzYo |
| Melissa Blank @MelissaMBlank Ok, my new #BTSM friends, I've officially had too much excitement for today. When is the next one? #bedtime #SleepingIsHealing |
| Liz Salmi @TheLizArmy @BTSMchat T3: To predict 2030, I look back at what has happened (or NOT happened) between 2010-2020. There are no new @US_FDA-approved therapies for people w/brain tumors. Standard of care is still surgery, radiation, temozolomide (+ other old drugs), and maybe that magical cap. #btsm |
| Sabin Motwani @sabinbmotwanimd A3. Also hope the role of radiation becomes even more refined, and we will have better imaging tools to distinguish pseudo progression vs progression of disease, and better biomarkers to know when to escalate therapy. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T3: Brain Tumor Care in the future should put the patient first. Ask us questions about what we want vs. what is possible. #btsm |
| Lisa O'Leary @lisaoleary524 RT @DrAMansouri: @BTSMchat T3: @BTSMchat T3: The perspective of patients and care partners will also be given stronger weight, as an effective management strategy is one that fits in well with an individual's lifestyle and philosophy as well. #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc RT @BTSMchat: 🔮🔮🔮 T3: What should brain tumor care look like by 2030? #BTSM 🔮🔮🔮 |
| Jared Rubenstein, MD @DrJRubenstein @BTSMchat @TheLizArmy has a fantastic meme for this #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat #BTSM |
| Alireza Mansouri @DrAMansouri @BTSMchat key frontiers in my opinion will be: 1) Effective means for non-invasive/ minimally invasive sampling of tumor and microenvironment 2) Better ability to cross the blood-brain barrier with our drugs 3) A smarter approach to drug development- e.g. drug repurposing #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat T3: Highly detailed, molecularly distinct diseases with more effective treatment that ideally avoids the current militaristic mindset toward treating tumors. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat @US_FDA T3b. What I would like to see happen in BT care by 2030: ✔️Design a standard for palliative care (#hpm #hapc) ✔️Better detection (not sure how?) ✔️Better imaging! MRI is still black & white. Surely something better is in the works? ✔️TRAIN ALL NEUROSURGEONS! #btsm |
| #BTSM chat @BTSMchat @MelissaMBlank First Sunday of every month at 6 PM PT/9 PM ET! #BTSM Plus catch our co-moderators @lisaoleary524 and @adamhayden on the third Sunday of the month for their virtual brain tumor support conversation via @NBTStweets #BTSM |
| Sabin Motwani @sabinbmotwanimd A3. I hope that by 2030, for every type of brain cancer diagnosed, there is a support group associated with each diagnosis and each MD is aware of them. 1:1 #BTSM |
| Liz Salmi @TheLizArmy RT @BTSMchat: #BTSM IRL connections like this are the best! |
| Charlie Blotner @CBlotner_ @DrJRubenstein @BTSMchat I'd love that too! It would be wonderful if the brain tumor patients I meet in hospice had experienced the joys of palliative care before we crossed paths. #btsm |
| Katie Mang @KatieMang @BTSMchat T3 i hope we can get to accessible, affordable care ASAP and not 2030. Better patient and care partner education and care planning assistance. More treatment options!! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @TheLizArmy: @BTSMchat @US_FDA T3b. What I would like to see happen in BT care by 2030: ✔️Design a standard for palliative care (#hpm #hapc) ✔️Better detection (not sure how?) ✔️Better imaging! MRI is still black & white. Surely something better is in the works? ✔️TRAIN ALL NEUROSURGEONS! #btsm |
| #BTSM chat @BTSMchat RT @sabinbmotwanimd: A3. I hope that by 2030, for every type of brain cancer diagnosed, there is a support group associated with each diagnosis and each MD is aware of them. 1:1 #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors T3: 2030 Breakthrough towards finding a cure and where brain tumors come from. #BTSM |
| Lisa O'Leary @lisaoleary524 RT @BTSMchat: @MelissaMBlank First Sunday of every month at 6 PM PT/9 PM ET! #BTSM Plus catch our co-moderators @lisaoleary524 and @adamhayden on the third Sunday of the month for their virtual brain tumor support conversation via @NBTStweets #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3: With great hope, maybe brain tumors in 2030 will be treated way strep throat/maligned appendix OR, at least, hope for day we it is a chronic, but manageable illness. That care for it isn’t simply fighting or dead— that “in the middle” is also treated, in all the ways. #BTSM |
| Charlie Blotner @CBlotner_ @TheLizArmy @BTSMchat @US_FDA "that magical cap" 😂 #btsm |
| Liz Salmi @TheLizArmy @JennaJohnsonRD @BTSMchat Hello! So glad you finally found us. Put the #BTSM live chat on your calendar. Your perspective is welcome here. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @Lifeiskitsch @eleighrobs @BTSMchat @theABTA YES! #btsm https://t.co/94G2DcFuql |
| Vaxed, mask-wearing globetrotter 🇰🇾🇺🇸🇬🇧 @bermudababe76 @BTSMchat T3 #BTSM Another thought on this was offering more clinical trials in more locations. My mom chose to not participate in trials or seek other opinions because she didn’t want to travel from home. It was important to her to be in her home & be close to her animals. |
| Alireza Mansouri @DrAMansouri @Lifeiskitsch @BTSMchat Makes quality of life ever so more important to consider in our therapies! #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc RT @KatieMang: @BTSMchat T3 i hope we can get to accessible, affordable care ASAP and not 2030. Better patient and care partner education and care planning assistance. More treatment options!! #btsm |
| Alireza Mansouri @DrAMansouri @bermudababe76 @BTSMchat Ideally clinical trial repositories like https://t.co/MBKGK0g3tn are also more accessible, accurate, and user-friendly as well #BTSM |
| Liz Salmi @TheLizArmy @CBlotner_ @BTSMchat " The content available is absolutely incredible on here." - @CBlotner_ I agree. I feel like #BTSM is a different vibe than what I find in the brain tumor Facebook groups. They are very different, and both are needed, but on Twitter I feel like some action is happening. |
| #BTSM chat @BTSMchat Almost time for our final question. Let’s get ready for T4 in just 1 minute! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @Sabine_NJ @eleighrobs @BTSMchat @theABTA Yesss! I was still allergic to & taking Temodar! #BTSM |
| Sabin Motwani @sabinbmotwanimd @TheLizArmy @BTSMchat @US_FDA Well the new @US_FDA Commissioner is @SteveFDA who is a board certified med onc and #RadOnc. The #radonc community is excited to have him at the helm to see how he moves oncology management and treatments forward. #BTSM |
| Lisa O'Leary @lisaoleary524 Can I get an AMEN! #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T3. I would love for a standard that speaks to ongoing assessment of seizure med effectiveness re: potential for tapering - I'm tapering one of mine for the first time EVER in my 13ish years on them. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat **”when,” not “we.” Stupid autocorrect! #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @lisaoleary524: Can I get an AMEN! #BTSM |
| Alireza Mansouri @DrAMansouri @CBlotner_ @BTSMchat Unfortunately I too commonly see people who have been on their seizure med for years without any recent seizures. We need a pathway and guidelines on how this should be managed. Medication side effects, driving license etc affect quality of life #BTSM |
| Misha Santa Barbara 🍑 🇨🇿 @mishasb @TheLizArmy #btsm Glad to be here - yes, apparently it is - only a few documented cases - there was a paper written on my case - you know the 15 mins of scientific fame I didn't ask for - https://t.co/DskUXY5Mky |
| Liz Salmi @TheLizArmy @SeriFeliciano @BTSMchat Jose: You've spent a number of hours reading and analyzing #BTSM tweets and chats. Probably more than anyone. Have you noticed anything interested we should know about? |
| #BTSM chat @BTSMchat 💫🦄💫 T4: How might Twitter and #BTSM play a role in transforming brain tumor care for the future? 💫🦄💫 |
| #BTSM chat @BTSMchat RT @lisaoleary524: Can I get an AMEN! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @Sabine_NJ I was wearing brain earrings & I think my hair was fading from either blue or purple or pink? 🤷♀️🧠 #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc RT @BTSMchat: 💫🦄💫 T4: How might Twitter and #BTSM play a role in transforming brain tumor care for the future? 💫🦄💫 |
| Alireza Mansouri @DrAMansouri @BTSMchat I think we are seeing the transformation right now- More innovative research in to the psychosocial element of brain tumors. #BTSM |
| Liz Salmi @TheLizArmy @DrJRubenstein @BTSMchat I do??? Or are you asking me to create a meme? Because you know I am always down for a #BTSM meme challenge. Currently inspired by @ogcancerpatient memes. |
| 𝕗𝕤𝕔𝕙𝕞𝕟𝕟 @fschmnn @BTSMchat T4: better awareness for medical teams of real issues patients deal with beyond nuts and bolt of treatment. #btsm |
 | Bingle @TheBingle RT @TheLizArmy: @BTSMchat T3: @BTSMchat T3: To predict 2030, I look back at what has happened (or NOT happened) between 2010-2020. There are no new @US_FDA-approved therapies for people w/brain tumors. Standard of care is still surgery, radiation, temozolomide (+ other old drugs), and maybe that magical cap. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @DrAMansouri @CBlotner_ @BTSMchat Education for young Dr's about BT and seizure meds would be awesome. My new Dr took me off seizure meds 3 months after I was in ICU with seizure activity. Later in the year after further, worsening seizure activity my new neurosurgeon has put me back on anti seizure meds #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat @MelissaMBlank @lisaoleary524 @adamhayden @NBTStweets I highly recommend the video chat/virtual support with @lisaoleary524 and @adamhayden! They get into the feels, which is great. Also, we use the hashtag all month long. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T4: I think as social media advances or changes, so will medical/research/patient/caregivers/academics. Opinions & feedback on platforms such as this may become hugely impactful. Participating is advocacy. #BTSM |
| Misha Santa Barbara 🍑 🇨🇿 @mishasb #btsm I hope by 2030, brain tumor or brain cancer won't trigger a complete horror on people's faces, the death sentence. It will make enough progress so people meet it with hope |
| Lisa O'Leary @lisaoleary524 T4: Get the patient and care partner voice out there so practitioners understand what matters to us most which isn't always just a longer life. A better life with more quality time matters to most I've met. Perhaps we (Twitterverse) can help push this as the endpoint. #btsm |
| Erica Robinson @eleighrobs @BTSMchat #BTSM https://t.co/FLCnhtOhYj |
 | Shawn Carey @shawncarey8 @BTSMchat I heard about #BTSM after attending the #Head2Hill event with @NBTStweets. Since then, I have not looked back! 🤗 |
| Sabin Motwani @sabinbmotwanimd A4 Perhaps #btsm can be a clinical trial repository for all brain tumors organized by states in the US, and eventually countries in the world. |
| Jared Rubenstein, MD @DrJRubenstein @TheLizArmy @BTSMchat @ogcancerpatient Yes! The palliative + curative jealous girlfriend #BTSM |
| Liz Salmi @TheLizArmy RT @KatieMang: @BTSMchat T3 i hope we can get to accessible, affordable care ASAP and not 2030. Better patient and care partner education and care planning assistance. More treatment options!! #btsm |
| #BTSM chat @BTSMchat We like the way you think! #BTSM #bigideas |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat T4: #BTSM and Twitter can bring people that care about brain tumors together, so that we can find new ways to collaborate for social/medical change regardless of whether we're patients, caregivers, health professionals or anyone who cares to make a difference 👩👩👧👦⚡️ |
| Low Grade Glioma Registry @gliomaregistry An independent review |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T4 A4 Expanding the 'player base' by having a multidisciplinary group who are dedicated to making life better for those of us with BT, our families, carers and clinicians. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @DrJRubenstein @BTSMchat @ogcancerpatient My favorite meme-y is still the kinda thingy @vickyyyf made for IDH1 mutant all those years ago? It’s not a meme— but it’s that cat jumping out to whatever IDH1 translates into in science speak. 🧬 🧪 #BTSM |
| Charlie Blotner @CBlotner_ @Ailuj_Nostrebor @DrAMansouri @BTSMchat Yikes! Balancing vigilence without throwing caution to the wind is a definite line to be mindful of. Sorry that your activity worsened like that, Julia. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @lisaoleary524: T4: T4: Get the patient and care partner voice out there so practitioners understand what matters to us most which isn't always just a longer life. A better life with more quality time matters to most I've met. Perhaps we (Twitterverse) can help push this as the endpoint. #btsm |
| Liz Salmi @TheLizArmy @DrAMansouri @bermudababe76 @BTSMchat The @NBTStweets "hacked" https://t.co/SbH2e7D8SW and made it brain tumor-specific here: https://t.co/JxaFoa9ZcN. I agree with @bermudababe76: Making trials more accessible is so important. Maybe that's my new T4 answer. #btsm |
| Low Grade Glioma Registry @gliomaregistry RT @KickBrainTumors: T2: T2: I remember when joined the brain tumor community for #braintumorthursday 2010 after brain surgery, I couldn’t even type to tweet. @TumorWarrior Lou was a good friend who taught me the ropes. Lots of love in the community! #btsm Real talk. |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat Good read by @cshirky on how technology brings people with a common purpose together: https://t.co/e6Cfjz0O4W #btsm |
| Jared Rubenstein, MD @DrJRubenstein @BTSMchat T4: I think #BTSM can continue to lead the way in: 1: Tweesearch and leveraging this amazing community to further scientific knowledge. 2: Ensuring anyone with a new diagnosis can connect with someone who has walked a similar path. |
| I Live Now Rachel 💎 @KickBrainTumors RT @sabinbmotwanimd: A3. I hope that by 2030, for every type of brain cancer diagnosed, there is a support group associated with each diagnosis and each MD is aware of them. 1:1 #BTSM |
| Alireza Mansouri @DrAMansouri RT @TheLizArmy: @DrAMansouri @bermudababe76 @BTSMchat The @NBTStweets "hacked" https://t.co/SbH2e7D8SW and made it brain tumor-specific here: https://t.co/JxaFoa9ZcN. I agree with @bermudababe76: Making trials more accessible is so important. Maybe that's my new T4 answer. #btsm |
| Shawn Carey @shawncarey8 @BTSMchat I heard about #BTSM through the #Hea2Hill event in May 2019 with @@NBTStweets. I wanted to become a bigger part of the #braintumor community after I lost my mom to #GBM in 2018. Since then we haven’t looked back and our keeping up our #FightforMoe! |
| Sabin Motwani @sabinbmotwanimd A4 Imagine if we took even one day and each member of the #btsm community posted a brain clinical trial tweet, what the impact of that would be. |
| Low Grade Glioma Registry @gliomaregistry @SeriFeliciano maybe share some findings with the group for their input #bran |
| #BTSM chat @BTSMchat @shawncarey8 @NBTStweets We are so glad to have you with us, Shawn! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch RT @DrJRubenstein: @BTSMchat T4: @BTSMchat T4: I think #BTSM can continue to lead the way in: 1: Tweesearch and leveraging this amazing community to further scientific knowledge. 2: Ensuring anyone with a new diagnosis can connect with someone who has walked a similar path. |
| Charlie Blotner @CBlotner_ @SeriFeliciano @TheLizArmy @BTSMchat @gliomaregistry 👏👏👏👏👏👏👏👏👏 #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @CBlotner_ @DrAMansouri @BTSMchat I was in ICU in Feb 2019 on high dose Keppra. The Dr room me off an put me on Lamotrogine and stopped that in April. Seizures started again in August. The last one was 8 minutes! #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat I would love to see a new role for patients as "research advocates" in the future. #BTSM community is poised to push for this to happen. #BTSM had 2 posters at the big @NeuroOnc conference this year, and @vickyyyf mentioned the community in her keynote. https://t.co/jgkJDboUQV |
| St_Molly_AgentofChaos @Lifeiskitsch RT @TheLizArmy: @BTSMchat I would love to see a new role for patients as "research advocates" in the future. #BTSM community is poised to push for this to happen. #BTSM had 2 posters at the big @NeuroOnc conference this year, and @vickyyyf mentioned the community in her keynote. https://t.co/jgkJDboUQV |
 | ScottyBueno @heypunko @BTSMchat Might just be me, but I think that @lizsalmi is the glue that holds it all together. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @sabinbmotwanimd @BTSMchat Oh if only! Sadly, with rare and benign tumors that’s a pipe dream I fear. #btsm |
| Jared Rubenstein, MD @DrJRubenstein RT @TheLizArmy: @BTSMchat I would love to see a new role for patients as "research advocates" in the future. #BTSM community is poised to push for this to happen. #BTSM had 2 posters at the big @NeuroOnc conference this year, and @vickyyyf mentioned the community in her keynote. https://t.co/jgkJDboUQV |
| Matthew Katz, MD 🟦 @subatomicdoc RT @lisaoleary524: T4: T4: Get the patient and care partner voice out there so practitioners understand what matters to us most which isn't always just a longer life. A better life with more quality time matters to most I've met. Perhaps we (Twitterverse) can help push this as the endpoint. #btsm |
| Alireza Mansouri @DrAMansouri @bermudababe76 @BTSMchat Yes, criteria should be loosened (within reason) to allow for necessary investigations to be done closer to home. We also need to leverage technology for remote assessments, e-consents etc. #BTSM |
| #BTSM chat @BTSMchat @TheLizArmy showing us all how to get things done and reshape the traditional idea of what a "patient" or "care partner" is! #BTSM (This is @lisaoleary524 with the brag on Liz. Not her doing it herself.) 😉 |
| Liz Salmi @TheLizArmy @DrJRubenstein @BTSMchat @ogcancerpatient Oh, you mean this? #btsm https://t.co/DUWLLnozPC |
| Heather 🇺🇸 @ZHeatherChamp A4: Anything we can do to help drive convo about tumors that are rare and/or benign. Let’s do this! #btsm |
| Shawn Carey @shawncarey8 @BTSMchat T2: The best part about the #BTSM community is the people that I have met. You instantly bond over this shared experience & there is a level of understanding that makes you feel welcome. There is such an energy behind this group & a resolve to find a cure once and for all. |
| #BTSM chat @BTSMchat That’s a wrap! Thank you for joining the #BTSM tweet chat tonight. Your time, tweets and comments are greatly appreciated! Please vote below to decide when we should host our next #BTSM chat: |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat I hope that Twitter will show researchers the benefits including the patient voice into their research. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @ZHeatherChamp @sabinbmotwanimd @BTSMchat rare and benign tumours are the poor cousins are poorly understood. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp LOL. #btsm |
| Jared Rubenstein, MD @DrJRubenstein @TheLizArmy @BTSMchat @ogcancerpatient That’s the one! #BTSM |
| Jared Rubenstein, MD @DrJRubenstein RT @TheLizArmy: @DrJRubenstein @BTSMchat @ogcancerpatient Oh, you mean this? #btsm https://t.co/DUWLLnozPC |
| #BTSM chat @BTSMchat Looking for more? Tune in to Brain Tumor Support Conversations—virtual/video support group w/@lisaoleary524 & @adamhayden—on Sun, Jan 19 at 4pPT/7pET. Patients, care partners, any brain tumor type, any stage of treatment can join! Register: https://t.co/6jD7Tl1XoT. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @shawncarey8: @BTSMchat T2: @BTSMchat T2: The best part about the #BTSM community is the people that I have met. You instantly bond over this shared experience & there is a level of understanding that makes you feel welcome. There is such an energy behind this group & a resolve to find a cure once and for all. |
| Lisa O'Leary @lisaoleary524 RT @BTSMchat: Looking for more? Tune in to Brain Tumor Support Conversations—virtual/video support group w/@lisaoleary524 & @adamhayden—on Sun, Jan 19 at 4pPT/7pET. Patients, care partners, any brain tumor type, any stage of treatment can join! Register: https://t.co/6jD7Tl1XoT. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @heypunko @BTSMchat @lizsalmi Glials are the physical glue. @TheLizArmy is the community’s glue. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @Ailuj_Nostrebor @sabinbmotwanimd @BTSMchat That no one thinks about. Like how Kevin was left Home Alone. #btsm |
| Vaxed, mask-wearing globetrotter 🇰🇾🇺🇸🇬🇧 @bermudababe76 @BTSMchat T4 #BTSM I want to use my talents/skills/interests for helping advance research, care & awareness. For example, I run marathons - & I do marketing in my job. I’d love to raise money for brain cancer research w/ my running & I’d be happy to help w/ marketing efforts. |
| #BTSM chat @BTSMchat Thanks for joining us tonight! Tonight’s #BTSM chat topics were created by @TheLizArmy and reviewed by @adamhayden @Sabine_NJ @CBlotner_ @lisaoleary524 & @JeremyPivor. Remember to use the #BTSM hashtag all month long for interesting healthcare posts, pics, articles & news. |
| Kate @Kate_chain @BTSMchat T3A3: Powered by data, driven by innovation. More emphasis on collaboration in research rather than competing for scarce resources which yields silos of findings. Surface more insights from operational data where clinical trials research may be scarce. Unified datasets! #BTSM |
| Lisa O'Leary @lisaoleary524 Goodnight everyone! Til next time! #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @ZHeatherChamp @sabinbmotwanimd @BTSMchat and like Kevin, make a mess and leave the place is desperate need of repair. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @bermudababe76 @BTSMchat Oh goodness, I need to bother you when I’m desperate to help raise money for @HeadfortheCure or @ImermanAngels!!!! I am the worst & yet I love these so much! #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @KatieMang @BTSMchat So hopefully patients can avoid filing BK after dx. Financial ruin post dx is a real thing. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @Ailuj_Nostrebor Well said! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @bermudababe76 @BTSMchat That would be so handy! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @Kate_chain: @BTSMchat T3A3: @BTSMchat T3A3: Powered by data, driven by innovation. More emphasis on collaboration in research rather than competing for scarce resources which yields silos of findings. Surface more insights from operational data where clinical trials research may be scarce. Unified datasets! #BTSM |
| Liz Salmi @TheLizArmy As #BTSM chat wraps up for the evening, I just want the community to know I will be re-reading the transcript! There were so many great ideas shared and I want to see how we can move these forward. Transcript here: https://t.co/JUcfSttyXt |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @bermudababe76 @BTSMchat I'm tagging @theABTA because they have a program for exactly this! https://t.co/Mgm4B3ugpb "Team ABTA is made up of dedicated individuals who run, bike or swim the extra mile to raise funds for brain tumor research" #btsm |
| #BTSM chat @BTSMchat A transcript of tonight's #BTSM chat can be found here: https://t.co/36r3hju2TT Thank you to @symplur @healthhashtags for making this free resource available. |
| St_Molly_AgentofChaos @Lifeiskitsch RT @BTSMchat: A transcript of tonight's #BTSM chat can be found here: A transcript of tonight's #BTSM chat can be found here: https://t.co/36r3hju2TT Thank you to @symplur @healthhashtags for making this free resource available. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: A transcript of tonight's #BTSM chat can be found here: A transcript of tonight's #BTSM chat can be found here: https://t.co/36r3hju2TT Thank you to @symplur @healthhashtags for making this free resource available. |
| Sabin Motwani @sabinbmotwanimd cc: @PRJeffWhite @ASTRO_org |
| #BTSM chat @BTSMchat Thank you to all 38 unique participants adding to tonight's #BTSM conversation. Tonight's "most prolific" tweeters included: @Lifeiskitsch @lisaoleary524 @Sabine_NJ @DrAMansouri @CBlotner_ @DrJRubenstein @ZHeatherChamp @Ailuj_Nostrebor and @TheLizArmy. https://t.co/tbgQZNeEao |
| Shawn Carey @shawncarey8 @BTSMchat T4: Twitter & other social media platforms provide a platform to share our stories. This can help drive dollars to research leading to better treatment options & a better level of care for patients & families. It’s also a way for our community to connect with each other. #BTSM |
| Shawn Carey @shawncarey8 @BTSMchat @Lifeiskitsch @lisaoleary524 @Sabine_NJ @DrAMansouri @CBlotner_ @DrJRubenstein @ZHeatherChamp @Ailuj_Nostrebor @TheLizArmy This is how you start a movement! #btsm 💪🏼🧠 |
| Shawn Carey @shawncarey8 @BTSMchat @TheLizArmy @adamhayden @Sabine_NJ @CBlotner_ @lisaoleary524 @JeremyPivor Thanks for all your work! Your work is helping make a difference for some many families. #btsm |
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