#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! https://t.co/CPoLn5Sefp |
 | NCI Cancer Stats @NCICancerStats According to 2012-2016 data, the percent of brain and other nervous system cancer deaths is highest among people aged 65-75. Find more brain cancer stat facts and resources here: https://t.co/L2LuXfQkWz #BTSM @BTSMchat https://t.co/DRyTBA1zC2 |
| #BTSM chat @BTSMchat Tonight's chat is all about the progress ahead! We’re sharing our challenges and goals for 2020 to learn from each other and feel the support from our #braintumor community. #BTSM https://t.co/H02pmxUg44 |
| #BTSM chat @BTSMchat Running this orange chat bubble tonight is @adamhayden, an organizer for the community, husband to the amazing @mrsadamhayden, a dad to three kiddos, and a philosopher of science. Living with GBM since 2016. Yo yo! #BTSM https://t.co/gbjKss2lHI |
 | Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Tonight's chat is all about the progress ahead! We’re sharing our challenges and goals for 2020 to learn from each other and feel the support from our #braintumor community. #BTSM https://t.co/H02pmxUg44 |
 | OurBrainBank @ourbrainbank RT @BTSMchat: Tonight's chat is all about the progress ahead! We’re sharing our challenges and goals for 2020 to learn from each other and feel the support from our #braintumor community. #BTSM https://t.co/H02pmxUg44 |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Tonight's chat is all about the progress ahead! We’re sharing our challenges and goals for 2020 to learn from each other and feel the support from our #braintumor community. #BTSM https://t.co/H02pmxUg44 |
| Edjah Nduom, MD (he/him) @EKNduom RT @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! https://t.co/CPoLn5Sefp |
| #BTSM chat @BTSMchat Topics for tonight were expertly crafted with love by @Sabine_NJ The #BTSM organizing team also includes @TheLizArmy, @lisaoleary524, @cblotner_, & @JeremyPivor |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Running this orange chat bubble tonight is @adamhayden, an organizer for the community, husband to the amazing @mrsadamhayden, a dad to three kiddos, and a philosopher of science. Living with GBM since 2016. Yo yo! #BTSM https://t.co/gbjKss2lHI |
| #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! |
 | I Live Now Rachel 💎 @KickBrainTumors RT @BTSMchat: Tonight's chat is all about the progress ahead! We’re sharing our challenges and goals for 2020 to learn from each other and feel the support from our #braintumor community. #BTSM https://t.co/H02pmxUg44 |
 | Aaron @amhoov Quick note to followers - I’ll be participating in the #btsm (brain tumor social media) chat for the next hour. Feel free to mute me if you want to keep your feed free of brain cancer (and who doesn’t want that?). |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Topics for tonight were expertly crafted with love by @Sabine_NJ The #BTSM organizing team also includes @TheLizArmy, @lisaoleary524, @cblotner_, & @JeremyPivor |
| #BTSM chat @BTSMchat @AshleySumrallMD 👀 #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ Sooo much L🧡VE! #btsm |
 | Candace @RareCandace @BTSMchat #BTSM |
| Aaron @amhoov I’m Aaron in Boston. Diagnosed with GBM in April. I’m here to make more connections with brain tumor patients and survivors and just generally to learn. #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat Edjah Nduom, neurosurgeon-scientist and neurosurgical-oncologist at @NINDSnews @NINDStrials, but all tweets/opinions my own. Excited to be able to make this last chat of 2019! #BTSM |
 | Toph @IamTheToph @BTSMchat Toph (Chris). Based in Philly. I'm a husband and father of two. I'm hear because I have a benign brain tumor (Acoustic Neuroma). I'm living the watch and wait lifestyle. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Hi, I’m Sabine; AA3 survivor of 5.5 years, living in NJ. Passionate bt advocate and advisor for multiple organizations. #btsm |
 | Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat Hi. 👋🏻 I’m a neuro-onc from NC. Hoping everyone had a great Thanksgiving! Still recovering from #SNO19 #btsm https://t.co/Tj0Eca1btL |
 | Mariah Jae @MariahJaeee @BTSMchat Hi! Mariah (she/her), 28, watch&wait of LGG for several years. Normally I’m based in NYC but I’m visiting my parents out in a California and almost forgot since this is so early out here! #btsm |
| #BTSM chat @BTSMchat @amhoov Welcome! We’re all about connections! Stronger together! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD Join in, #btsm community |
 | Alireza Mansouri @DrAMansouri @BTSMchat Alireza Mansouri, Neurosurgeon and Brain Tumor researcher, excited to hear about plans for 2020! #btsm |
| #BTSM chat @BTSMchat @EKNduom @NINDSnews @NINDStrials Great to see you here tonight! #btsm |
| #BTSM chat @BTSMchat @EKNduom @NINDSnews @NINDStrials This is for all of the great #SNO2019 coverage! #btsm |
 | SeleneSeltzer @SeleneSeltzer @BTSMchat Selene Seltzer Clinical Healthcare Chaplain [#PalliativeCare] Here to support, listen and learn :-) #btsm |
 | Akanksha Sharma MD @AkankshaMD When I try to encourage everyone to read it NOW! Disease, palliative care, hospice and dying is demystified in this excellent book. Why wouldn’t you want to better informed - when it’s the universal journey?! Thank you @bjmillermd and @shoshanaberger!! #hpm #palliativecare #btsm |
 | Heather 🇺🇸 @ZHeatherChamp @BTSMchat I’m Heather. Person living w 2 rare brain tumors called Gangliocytoma. I don’t fit in here much as mine are #benign, but lurking I suppose. #BTSM |
| #BTSM chat @BTSMchat @IamTheToph Welcome! #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. |
| #BTSM chat @BTSMchat @IamTheToph Welcome Toph! Thanks for joining the #btsm family! |
| #BTSM chat @BTSMchat #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community and is not owned by any organization. |
 | KateWhy @KattyBatty1 @BTSMchat #BTSM. Just another parent of a teen who had his 2nd surgery this summer for a juvenile pilocytic astrocytoma... 😁 |
 | Charlie Blotner @CBlotner_ @BTSMchat Charlie in Seattle, here. It's getting hard for me to remember how many yrs out from my awake cranio for a grade II astrocytoma this is...7? Wow. Now a hospice social worker seeing the caregiver point of view. #btsm |
| Edjah Nduom, MD (he/him) @EKNduom RT @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. |
 | Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat Good evening! Matt Katz here, radiation oncologist in Massachusetts. I hope everyone had a nice weekend! #btsm |
 | St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Molly. Anaplastic Astrocytoma. Diagnosed 10/2016. Deep left temporal lobe. Currently stable. Metro-Detroit. Love my Henry Ford team & brain cancer advocacy. #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat Hi I’m @jessicamorris living w #GBM since Jan 2016. Founder of @ourbrainbank here to share and learn #BTSM |
 | Pam Westcott @PWestcott RT @BTSMchat: #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community and is not owned by any organization. |
| #BTSM chat @BTSMchat Our #BTSM chat lasts 1hr. It's designed to connect and educate the brain tumor community, develop our voices, connect patients/loved ones with healthcare professionals, and spur action. |
| #BTSM chat @BTSMchat While intros continue, let’s go over some #BTSM tweetchat 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 @MariahJaeee Hi Maria, enjoy the weather in CA. It's coooold in NYC! #btsm |
| I Live Now Rachel 💎 @KickBrainTumors Survivors need to be prepared with the right knowledge and tools to navigate into 2020, and get support needed for your positive journey. ~ Rachel #BTSM Hello everyone. I am multitasking and listening in. https://t.co/1OPVNF1awA |
| #BTSM chat @BTSMchat Watch this orange #BTSM avatar for the 4 topics we’ll be discussing. Adam (🙋🏼♂️) may sign some tweets “amh” if I’m expressing a more “Adam” view or question to advance convo! Of course these are my opinions and not those of all organizers! |
 | Erica Robinson @eleighrobs @BTSMchat Erica from Boston. @NBTStweets advocate, survivor, team captain. The questions you asked above remind me of waking up from craniotomy. Every hour- who are you? Where are you? Why are you here? What's today? Wiggle your hands and feet. I mean that w/♥️! #BTSM |
 | Emily McIntosh @mcintose @BTSMchat Hi! Emily - PhD candidate, patient advisor, and AA3 survivor from 🇨🇦 #BTSM |
| #BTSM chat @BTSMchat Topics are labeled T1, T2, T3 and T4. Please label your answers with T1, T2, etc to make conversation easier to follow. And for the love of artisanal sourdough baguette don’t forget #BTSM 🥖 🧠 |
 | Rachel Yan @rachyan_ @BTSMchat Rachel, a med student in NJ who is interested in taking care of patients and families dealing with brain tumors someday. Here to listen and learn. #BTSM |
| #BTSM chat @BTSMchat Let’s get ready for T1 in just 1 minute. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @IamTheToph That’s very nice to hear. First time I’ve been told that. Thank you 🙏🏻💕 #btsm |
 | Karen Derris @KarenDerris @BTSMchat Hi, I’m Karen. In S. Cal. I’m looking for community as I’m living with brain cancer.#BTSM |
| #BTSM chat @BTSMchat @DrAMansouri Welcome to our chat, Dr. Mansouri! #btsm |
| Aaron @amhoov @LisaJaayyy We moved a lot. I lived on the west side (17th and Jefferson) as a young kid. Moved to Lee’s Summit around 10, and then to Brookside around 14. #btsm |
| I Live Now Rachel 💎 @KickBrainTumors RT @BTSMchat: Topics are labeled T1, T2, T3 and T4. Please label your answers with T1, T2, etc to make conversation easier to follow. And for the love of artisanal sourdough baguette don’t forget #BTSM 🥖 🧠 |
| #BTSM chat @BTSMchat @rachyan_ Thank you, Rachel! I sense a budding partnership! #btsm |
| I Live Now Rachel 💎 @KickBrainTumors RT @BTSMchat: Let’s get ready for T1 in just 1 minute. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @IamTheToph @BTSMchat My grandma had that. Surgery in the mid-1970s. She went to visit family in Argentina two weeks later. :) #BTSM |
| #BTSM chat @BTSMchat @LisaJaayyy Hi Lisa, thanks for joining tonight! #btsm |
| Heather 🇺🇸 @ZHeatherChamp @IamTheToph @BTSMchat PS followed you! #btsm |
| #BTSM chat @BTSMchat @SeleneSeltzer Welcome to the #btsm community! Excited to have you here with us. Looking forward to your input! #btsm |
| #BTSM chat @BTSMchat T1: Looking back at 2019, what are you most proud of? Patients? Care partners? Loved ones? New treatment? New milestone? Clinicians, career milestone? Maybe your impact factor went up?! 😆 #BTSM |
 | Emily Leaver @EmJLeaver @BTSMchat Emily / Nashville TN / 75% resection of AA3 in August. #BTSM |
| #BTSM chat @BTSMchat @EmJLeaver Welcome! #btsm |
| #BTSM chat @BTSMchat @ZHeatherChamp Hello Heather! Good to see you here. #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T1: in 2019 I’m most proud of recognizing that I’m not doing well handling the diagnosis again. Psychologically I go through waves of it and hit some really low/bitter points about my BT in 2019 but instantly recognized them and plan to seek help #BTSM |
| #BTSM chat @BTSMchat @IamTheToph @Lifeiskitsch Here to find a grandma who isn’t bad ass! ;) #btsm |
| Alireza Mansouri @DrAMansouri @BTSMchat New job - transition from trainee to being Attending surgeon @PennStateHealth. Hoping to get a clinical trial started in 2020 :) #btsm |
| Charlie Blotner @CBlotner_ @EmJLeaver @BTSMchat Great to have you here tonight, Emily! #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T1: Few different answers. As a neurosurgeon, passing the oral boards from the American Board of Neurological Surgery this year (yes, it takes that long to be done with all exams!) #BTSM |
| #BTSM chat @BTSMchat @subatomicdoc Welcome back to our chat, Dr. Katz. #btsm |
| #BTSM chat @BTSMchat @Lifeiskitsch Hi Molly, always great to see you! #btsm |
| #BTSM chat @BTSMchat @ourbrainbank @jessicamorris Thank you for joining into the conversation, Jessica. #btsm |
| OurBrainBank @ourbrainbank @BTSMchat T1: living w brain cancer can dominate, and it can be tough to separate who u r from the brain tumor. The OBB community is evolving into a progressive force and I couldn’t be more proud #BTSM |
| Aaron @amhoov T1: In the context of my cancer, I’m most proud of advocating for myself and getting my NO to sign off on cocktail therapy (though, he didn’t take much convincing since he’s a researcher). #btsm |
| #BTSM chat @BTSMchat @EKNduom You’ve certainly passed the patient advocacy exams! :) #btsm |
| #BTSM chat @BTSMchat @eleighrobs @NBTStweets Welcome back to the chat, Erica! #btsm |
| I Live Now Rachel 💎 @KickBrainTumors Rachel here from North Carolina. I am here to see how others lives have been impacted. Be it negative or positive. What challenges do we share... #BTSM |
| #BTSM chat @BTSMchat @mcintose Welcome to our friend from Canada! #btsm |
| Toph @IamTheToph @BTSMchat I'm proud that when I got my first follow up MRI I listened to my doctors, fellow acoustic neuroma patients, and close friends. I wanted to make a more rash choice, but I listened to those I love and care for, and I did the right thing for me. #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat @jessicamorris So glad I could make this one! Great community #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1: I got to do so much cool stuff (thanks to @HenryFordNeuro & @JimSnyderDO). San Diego to check out @Tocagen (met cool folks), DC for Head to the Hill (more cool folks IRL), @HeadfortheCure ambassador stuff, Chicago for @theABTA conference thingy... busy, busy year! G# #BTSM |
| SeleneSeltzer @SeleneSeltzer RT @ourbrainbank: @BTSMchat T1: @BTSMchat T1: living w brain cancer can dominate, and it can be tough to separate who u r from the brain tumor. The OBB community is evolving into a progressive force and I couldn’t be more proud #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T1: As a parent, hard to pick one moment, but with #RecencyBias I was super proud of being able to go on a family bike ride a few weeks ago (with my 4 and a half year old riding behind me on a tandem bike). #BTSM |
| #BTSM chat @BTSMchat 🙌🏼🙌🏼 self awareness is an awesome achievement! Boo to the cultural narrative to fight fight fight, let’s acknowledge our partnership with others! Love this! #btsm |
 | RLB @RLaBArch @BTSMchat T1: I’m proud that I’ve been able to adjust to life after diagnosis and surgery. My family and my partner have probably had it much harder than I have, and I’m thankful they have been there for me #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T1 Proud to be at a point in my personal + professional life where I say "no" when at capacity, prioritizing sleep, supported by those around me, and the happiest I've ever been. I've also enjoyed seeing patients & providers blossom in their advocacy for this community! #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat Thanks, glad to be able to join! Either way is fine but I prefer Matt - my dad is Dr. Katz. 😄 #btsm |
| #BTSM chat @BTSMchat @IamTheToph @Lifeiskitsch *Hard to find!!! Ugh auto-incorrect! -amh #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T1: As a patient advocate, joining the board of @NBTStweets was incredibly rewarding, as was helping organize the 2nd @SNOSSA1 meeting in Cape Town, South Africa #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T1: T1: Looking back at 2019, what are you most proud of? Patients? Care partners? Loved ones? New treatment? New milestone? Clinicians, career milestone? Maybe your impact factor went up?! 😆 #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1-.2: and as an aside, I went to the gym lifting weight 3x week for a solid year, training. Non-gym days were running days or rest. But most of my year I achieved fitness goals. My deadlift & squats are solid. Weight loss? Not so much. But I feel great! #BTSM |
 | Dr. Vicky Forster @vickyyyf @BTSMchat Hello! Vicky here based in Toronto, Canada. I'm a pediatric cancer research scientist and pediatric cancer survivor as well as advocate for more patient/survivor/caregiver involvement in all stages of the research process. Here to listen and learn! #BTSM https://t.co/LIl8z9G1eX |
| Matthew Katz, MD 🟦 @subatomicdoc RT @BTSMchat: Tonight's chat is all about the progress ahead! We’re sharing our challenges and goals for 2020 to learn from each other and feel the support from our #braintumor community. #BTSM https://t.co/H02pmxUg44 |
| #BTSM chat @BTSMchat Check out this patient powered non profit! Doing awesome things with patients at the center! #btsm #obb100 |
| KateWhy @KattyBatty1 @BTSMchat T1/ The teen recovered from surgery. He reearned how to walk—again. Went back to high school, and gulp, got his drivers learners permit. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Most proud: being asked to become a momber of @sloan_kettering’s Paitent Advisory Council. #btsm |
| Emily McIntosh @mcintose @BTSMchat T1. I'm most proud that I was able to finish collecting all of the data for my last PhD study. I did it in time to present it at a conference in Scotland; crossing off hiking in the highlands off my bucket list! #BTSM |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: Check out this patient powered non profit! Doing awesome things with patients at the center! #btsm #obb100 |
 | 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T1 Graduation with BPsychSc! #BTSM |
 | Hina Saeed, MD @HinaSaeedMD RT @BTSMchat: Tonight's chat is all about the progress ahead! We’re sharing our challenges and goals for 2020 to learn from each other and feel the support from our #braintumor community. #BTSM https://t.co/H02pmxUg44 |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat @NBTStweets @SNOSSA1 T1: And as a clinician, I am really proud to say that I have now had a few patients come into the office this year and say something along the lines of, "I follow you on Twitter, and I love a lot of what you say." Makes me think that we're already on the same team, together #BTSM |
| #BTSM chat @BTSMchat @IamTheToph We like to call our loved ones “care partners,” we’re all in this together! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1: The best, sweetest pts. A great team! @Oncoceutics & the #ONC013 trial. Presenting on brain tumors & #H3K27m at #JSCO19 in Japan! Then presenting @sno #SNO2019 #btsm https://t.co/gqkBLa7n50 |
| Erica Robinson @eleighrobs @amhoov Welcome! #BTSM https://t.co/4GnmM0Bp5c |
| #BTSM chat @BTSMchat @mcintose What's the topic of your thesis? #btsm |
| OurBrainBank @ourbrainbank @BTSMchat Connecting with others - patients, carers, doctors - is an under appreciated, critical part of brain tumor therapy #btsm |
 | Dr. Rebecca B. Riggins 🇻🇮👩🏻🔬⛵️ @Prof_Riggins Becca from @LombardiCancer, cancer researcher studying mechanisms of drug resistance in GBM #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Check out this patient powered non profit! Doing awesome things with patients at the center! #btsm #obb100 |
| St_Molly_AgentofChaos @Lifeiskitsch @IamTheToph @BTSMchat She died in 1991 in her 80s. No new brain tumor reoccurrence or anything. She was working until the day she had a stroke! #BTSM |
| #BTSM chat @BTSMchat @LisaJaayyy Congrats! I finished my masters during active treatment. Ain’t easy, but feels great! Very proud moment! -amh #btsm |
| Alireza Mansouri @DrAMansouri @BTSMchat T1: As a dad, these two :) #BTSM https://t.co/D0XWKSfO4S |
| #BTSM chat @BTSMchat Let’s get ready for T2 in just 1 minute. #BTSM |
| Alireza Mansouri @DrAMansouri RT @ourbrainbank: @BTSMchat Connecting with others - patients, carers, doctors - is an under appreciated, critical part of brain tumor therapy #btsm |
| Charlie Blotner @CBlotner_ @MariahJaeee @BTSMchat Identifying the rollercoaster of responses that can come with a brain tumor diagnosis, and taking steps to seek out and get support in tandem is huge. Great to hear you're able to do this now! #btsm |
| #BTSM chat @BTSMchat Molly Marco is a household name in the #btsm space! Keep it going? MM! ❤️ #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat @HenryFordNeuro @JimSnyderDO @Tocagen @HeadfortheCure @theABTA Y’all I’m blowing this place up with redundancy & typos. #BTSM (I’ve typed out “NTSM” thricely tonight. |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat Oh wait!! Presenting my fave brain tumor pt story @asco #ASCO19 as part of ASCO voices 😊#btsm https://t.co/atPU80XC3B |
| #BTSM chat @BTSMchat @Prof_Riggins @LombardiCancer Welcome, Becca! Interesting research topic! #btsm |
| Emily McIntosh @mcintose @BTSMchat I am looking at age-related muscle changes and factors that might relate to falls risk #Biomechanics #Sarcopenia #InternalPerturbations #Falls #Handrails #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat @HenryFordNeuro @JimSnyderDO @Tocagen @HeadfortheCure @theABTA ) #BTSM |
| #BTSM chat @BTSMchat T2: Some incredibly vulnerable moments during T1, let’s dial up the real talk. What have you been struggling with and how are you working to overcome your challenge? #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @BTSMchat A1: I suppose proud I didn’t die. Had my first syncope (?) epi and thankfully didn’t get seriously hurt. Small blessings. #btsm |
 | Jeff Cee @jeff_ccc @BTSMchat Jeff here in Vancouver, Canada. May 2017 DX of #Glioblastoma #GBM . Grateful to be still alive & stable with help from #BCCancer & #VGH @BCCancer & @VGHFdn . Just following along as I’m out having dinner with family. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @Sabine_NJ @BTSMchat @sloan_kettering That’s amazing! #btsm |
| I Live Now Rachel 💎 @KickBrainTumors @BTSMchat T1: I am most proud of the fact I’m still here. There can be loss of self. As to the way things “use to be” Life goals give meaning to life and long term goals. Many challenges, side effect, may come into play. Fatigue, memory loss etc... #BTSM |
| SeleneSeltzer @SeleneSeltzer #btsm Intro- On top of balancing work, #carepartner for family member, + community-based volunteer work in PC, I'm one of @CoalitionCCC #PalliativeCare Social Media Ambassadors for 2019. |
| Aaron @amhoov T2: I struggle with saying “no” at work, being in the moment with my family, resting enough, balancing an uncertain future (bucket list goals) against getting day-to-day stuff done. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T2: T2: Some incredibly vulnerable moments during T1, let’s dial up the real talk. What have you been struggling with and how are you working to overcome your challenge? #BTSM |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T2 Seizures that landed me in ICU. I have a new neurosurgeon. New MRI done last week, appointment for results the morning after graduation. Worried about regrowth and the impact of more seizures. #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat T1: I returned to working in NH as well as MA, which I enjoy. I am gratified that on social media has gained more legitimacy as a valid tool for health communications. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @BTSMchat A2: Oooh. So, real talk: my ego is interfering in a lot of my activity in #btsm. Struggling w/acceptance of reality, not being included, not a “true” advocate bc I can’t travel to events $, etc. Don’t know how to overcome. #BTSM |
| #BTSM chat @BTSMchat @amhoov I think @CBlotner_ mentioned in T1 he was proud of starting to say “no” more often! Charlie, guide us! ❤️ #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T2: struggles: the good old parenting/mothering struggle that is real even without cognitive challenges... #btsm |
| Akanksha Sharma MD @AkankshaMD @BTSMchat T1: I’m most proud of being able to complete my studies exploring QOL issues in BT patients and caregivers, and joining #headtothehill for the first time and being an active part of this amazing community. It has been so energizing and reaffirming. #BTSM |
| Mariah Jae @MariahJaeee @BTSMchat T2: I’ve been struggling financially in general and had more med bills this year than ever. Being on watch&wait can feel like waiting for the hammer to drop and sometimes I feel like I’ve waited so long I’ve missed some of my 20’s. Thank god for good friends and mindless tv #BTSM |
| Toph @IamTheToph @BTSMchat T2 #BTSM My hearing is getting worse, especially when there is a lot of noise. My kids are 2 and 6, so there is *always* a lot of noise. I'm struggling not with the hearing, but with my response to it, to not feel angry. I'm working on speaking up when I need things to quiet down |
| Alireza Mansouri @DrAMansouri @ZHeatherChamp @BTSMchat anything you do counts! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2: Time management, saying no, fighting for trials, making more time for my family. Keeping my own emotions in check when giving bad news. #btsm |
| OurBrainBank @ourbrainbank @BTSMchat Even w amazing docs 2019 v challenging for all w #glioblastoma w disappointing trials. I had recurrence and surgery. Able to use increased knowledge since diagnosis to access best advice #BTSM |
| #BTSM chat @BTSMchat @AkankshaMD Thank you for being an active member of our #btsm community, Dr. Sharma! |
| #BTSM chat @BTSMchat @Ailuj_Nostrebor Sorry to hear about this frightening episode! Are you still in hospital? Sending wishes that in partnership with care team you receive answers and a plan forward. #btsm |
| Heather 🇺🇸 @ZHeatherChamp @BTSMchat A2a: Further, my passing out epi really scared the crap out of me. I want my life to have meaning, esp with 2 rare disease dx. But don’t know “how” to be effective. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat @amhoov Hey Aaron - let's hear a little bit more about the type of job and asks you get at work. Curious to hear how we may be able to provide some insight if you'd like us to. #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T2: Mostly, I am trying to juggle the various things I am working on while giving them each the time they deserve. That has meant saying "No" a few times this year to new opportunities. That's hard to do, because there is so much work that needs to be done for the #BTSM community https://t.co/HGlQc1pQ8I |
| Heather 🇺🇸 @ZHeatherChamp @Ailuj_Nostrebor I’m thinking of you! #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @AshleySumrallMD @BTSMchat T2: Yes, similar for me. Balancing professional and family commitments with self-care is a constant effort for me. #btsm |
| #BTSM chat @BTSMchat @EKNduom Seems like we've got a theme here..! #btsm |
| Akanksha Sharma MD @AkankshaMD @BTSMchat T2: nothing compared to the struggles of my patients and caregivers, but finding a place for myself to further my career and be able to continue the work I started as I reach the next phase post-fellowship has been tricky. can I integrate neuro-Onc + pall care easily? #btsm |
| OurBrainBank @ourbrainbank #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2// in a bit of a place where I’m feeling so well & normal that my old anxieties & eating/diet problems resurfaced. & my dad is 81 & I’m only immediate family who is in state & local. I’m used to being taken care of, am spoiled baby— it’s an overwhelming change of pace. #btsm |
| Aaron @amhoov T2: It’s maybe weird to say, but I struggle to maintain the sense of urgency I felt when I first got the diagnosis now that I’ve had 3 clean MRIs. #btsm |
| #BTSM chat @BTSMchat For those who do not know @subatomicdoc, where ya been?! LOL! But do give him a follow! A long time leader for social media in illness and medical communities. #btsm |
| Mariah Jae @MariahJaeee @AshleySumrallMD @BTSMchat Watching scrubs as a teenager always made me realize how hard it is for docs to give bad news- when my NO told me back in 2015 I remember going home feeling so guilty she had to have such a bad day breaking that news! So hard to do #btsm |
| Emily McIntosh @mcintose @BTSMchat T2. Possibly starting to feel some radiation side-effects. Very sporadic and overwhelming short-term walls of exhaustion that come out of nowhere even when sleep, diet, stress and exercise are all well regulated. Working with an endocrinologist to see if something is up. #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @MariahJaeee Amen and amen! I couldn’t agree with you more. My $ burden got so great I eventually had to file BK. It was tough. PS what’s your fave mindless show? #btsm |
| Karen Derris @KarenDerris @BTSMchat @Sabine_NJ T2. Feeling like I’m starting to lose parts of myself. Can’t keep teaching full time, no energy. Fear my teen daughter will remember me as always sleeping #BTSM |
| Erica Robinson @eleighrobs @Ailuj_Nostrebor @BTSMchat That's a lot. Sending you strength and wishing you the best. #BTSM The people on this chat feel you! |
| SeleneSeltzer @SeleneSeltzer RT @CBlotner_: @MariahJaeee @BTSMchat Identifying the rollercoaster of responses that can come with a brain tumor diagnosis, and taking steps to seek out and get support in tandem is huge. Great to hear you're able to do this now! #btsm |
| Heather 🇺🇸 @ZHeatherChamp @KarenDerris 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻💕💕💕💕💕💕 #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat LOL - yes, my love for participating in online discussions is also a cause for tension trying to ensure I balance it with my offline love and duties, as well as some sleep :-) #btsm |
 | nopatchouliCNM @CNMnopatchouli @BTSMchat I struggling with actually going to my next MRI on the 15th. I am likely going to reschedule to January when it fits better in my life, but I really don’t want to go have it done at all. In nearly 14 years I haven’t felt this way before. No concerning symptoms at all. #BTSM |
| #BTSM chat @BTSMchat @AkankshaMD We appreciate all clinicians who aim to integrate palliative care! #btsm Let us know if you need input from a patient or caregiver perspective. #btsm |
| SeleneSeltzer @SeleneSeltzer RT @KickBrainTumors: @BTSMchat T1: @BTSMchat T1: I am most proud of the fact I’m still here. There can be loss of self. As to the way things “use to be” Life goals give meaning to life and long term goals. Many challenges, side effect, may come into play. Fatigue, memory loss etc... #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T2: I have the privilege to be reducing some of my seizure meds (for the first time ever!) this year, but it has been a big hurdle for me to take the first step in tapering the dosage. After a meeting w/ my PCP last week.. /1 #btsm |
| Heather 🇺🇸 @ZHeatherChamp @amhoov I kinda felt similar, until I passed out a few weeks ago. Glad you had clean scans! #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat I started on the road to 150mg Zonisamide before bed instead of 200mg. -50mg in the big picture is so small, but given how it found its way into my life, feels simultaneously like such a huge step! /2 #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T2: After being in practice treating mostly recurrent #GBM patients for some years and, now, running a clinical trial in recurrent GBM for a little over a year, I have been struggling with how our treatments have worked/not worked. The treatments often fail, and that's hard #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc @IamTheToph @BTSMchat Neutral good since '83 and going strong! #btsm https://t.co/hHkshkm0Mw |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @Lifeiskitsch @BTSMchat Come visit me and I’ll spoil you! #btsm |
| #BTSM chat @BTSMchat For those just dropping in, we’re discussing our second prompt on the theme of challenges and goals. T2. What have you been struggling with and how are you working to overcome your challenge? #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2// .2// Also Sorta having, like, a mid-life crisis. I fully don’t intend or expect to live into my 60s. I don’t have kids, I won’t have kids now... & having this whole deep, existential crisis (but also am happy, which is weird). Why am I here?! #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc RT @BTSMchat: For those just dropping in, we’re discussing our second prompt on the theme of challenges and goals. T2. What have you been struggling with and how are you working to overcome your challenge? #BTSM |
| SeleneSeltzer @SeleneSeltzer RT @EKNduom: @BTSMchat T2: @BTSMchat T2: Mostly, I am trying to juggle the various things I am working on while giving them each the time they deserve. That has meant saying "No" a few times this year to new opportunities. That's hard to do, because there is so much work that needs to be done for the #BTSM community https://t.co/HGlQc1pQ8I |
| #BTSM chat @BTSMchat If you are here tonight to just listen, please tweet “#BTSM” so we know you’re in the audience |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @KarenDerris @BTSMchat Similar fear over here. Plus “please be more quiet”. #btsm |
| Aaron @amhoov @Lifeiskitsch @BTSMchat I can so identify with all the existential stuff. It can be super overwhelming! #btsm |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: @EKNduom Seems like we've got a theme here..! #btsm |
 | Matt Cotcher @MLCotcher Late to the party but I brought tacos! #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @MariahJaeee I love me some #RHOBH and #90DayFiance! 😝🤗 #btsm |
| Karen Derris @KarenDerris @EKNduom @BTSMchat I was a part of a trial that didn’t do anything for me except make me feel awful. Still glad I did it if it helps get us more data that may be useful in a way you hadn’t imagined in the future.#BTSM |
| Charlie Blotner @CBlotner_ @CNMnopatchouli @BTSMchat Relatable. Varying concerns, ambivilence, and feelings of gratitude that were once beneath the surface aren't uncommon to be unearthed with time. Thanks for sharing. #btsm |
| Aaron @amhoov @CBlotner_ @BTSMchat I’m a professor, so there’s always pressure from all sides to do more. And, I have a stupid, overachiever tendency to derive validation from performing well. #btsm |
| #BTSM chat @BTSMchat Many shared themes on #BTSM right now! Clinicians juggling work, patients juggling finances, loved ones thinking through treatment. Good thing we have each other! Let’s get ready for T3 in just 1 minute! #BTSM |
| Mariah Jae @MariahJaeee @ZHeatherChamp I’ve never watched 90 day fiancé but can tell I’d love it- I once binged a whole season of Married at First sight in a day and was like if loving trash tv is wrong, I don’t wanna be right! #btsm |
| Erica Robinson @eleighrobs @BTSMchat I just had to check to make sure I was here last month! #BTSM 😅 |
| SeleneSeltzer @SeleneSeltzer RT @CBlotner_: @CNMnopatchouli @BTSMchat Relatable. Varying concerns, ambivilence, and feelings of gratitude that were once beneath the surface aren't uncommon to be unearthed with time. Thanks for sharing. #btsm |
| #BTSM chat @BTSMchat Our chat and organizers were highlighted by @vickyyyf at #SNO2019 and it was everything! #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2//.3// how do I manage/take some control back? I just acknowledge that I don’t have control. So I keep going & try to make best choices. I can’t stop won’t stop because one day it’ll all stop. So, until then— I just keep... going... and things seem to slide into place. #btsm |
| Aaron @amhoov @CBlotner_ @BTSMchat Also, I’m not always certain how well my colleagues understand the gravity of my diagnosis/prognosis. I don’t just wanna drop a number bomb on them, but I feel like if they knew, they’d be more considerate. #btsm |
| #BTSM chat @BTSMchat @Lifeiskitsch One of the reasons you are here is to raise your voice for the #btsm community. You are a rock star! #btsm |
| I Live Now Rachel 💎 @KickBrainTumors You do an excellent job🙌🏽 T2: 😂#BTSM You are appreciated! |
| #BTSM chat @BTSMchat T3: Looking ahead, what personal goals for 2020 are you excited about and how do you plan to accomplish them? #BTSM |
| Charlie Blotner @CBlotner_ @amhoov @BTSMchat Ahh, you're barking right up @srajabi 's alley! I imagine she'll have some insight to share the next time she hops on here. Academia is a beast like no other. #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @KarenDerris @BTSMchat Thank you for sharing - I'm sorry it did not work 4 you. 1 of my soapboxes is that if we design a trial, and it fails to help our patients the way we hoped, the least we can do is design it so that we are *guaranteed* to learn something that will make the next trial better. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Our chat and organizers were highlighted by @vickyyyf at #SNO2019 and it was everything! #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Many shared themes on #BTSM right now! Clinicians juggling work, patients juggling finances, loved ones thinking through treatment. Good thing we have each other! Let’s get ready for T3 in just 1 minute! #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom RT @amhoov: @CBlotner_ @BTSMchat I’m a professor, so there’s always pressure from all sides to do more. And, I have a stupid, overachiever tendency to derive validation from performing well. #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @amhoov @Lifeiskitsch @BTSMchat Serious illness can create many challenges to how we see ourselves, many stressors and a steep learning curve about how to adapt to the changes. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T3 Excited about getting into the Masters programme (fingers crossed). Starting more BT support research. Sorting out the seizures. Seeing my youngest get married! #BTSM |
 | Adam Marc (he/him) @adamhayden @CBlotner_ @amhoov @BTSMchat @srajabi Gotta slide in here as “me” to second all of this! I’m an RA, def not a prof, but I work for a chair, and it’s a wild ride. #btsm |
| Edjah Nduom, MD (he/him) @EKNduom @amhoov @CBlotner_ @BTSMchat #BTSM https://t.co/xHO21TJA9n |
| Alireza Mansouri @DrAMansouri @KarenDerris @EKNduom @BTSMchat on behalf of the clinical/scientific community, thank you so much for participating. I agree with @EKNduom re optimization of design! #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc @Sabine_NJ @KarenDerris @BTSMchat I'm sorry to hear about the fears, they are normal but still distressing. And hard when it changes how you see yourself or how others see you. Sending virtual hugs. #btsm |
| I Live Now Rachel 💎 @KickBrainTumors @BTSMchat T3: Exercise more. Stop procrastinating🤦🏽♀️ #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3// I want to do a powerlifting competition. I want to fit back into the jeans I wore in 2014 (that will mean I can fit back into all my favorite clothes since I can’t afford new stuff anyway). AND I WANT TO WRITE MORE. AND I WANT TO DO MORE PUBLIC SPEAKING. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: More advocacy. We’ve got to get NCI funding boosted! Only have a quick fix for now. https://t.co/CjdMIE1u27 #btsm |
| Jeff Cee @jeff_ccc @BTSMchat T2: I’ve been struggling with cognitive/mental fatigue. I find #mindfulness #meditation & breathing exercises help. It’s like a break for my brain to refresh itself. #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc RT @BTSMchat: T3: T3: Looking ahead, what personal goals for 2020 are you excited about and how do you plan to accomplish them? #BTSM |
| Mariah Jae @MariahJaeee @BTSMchat T3: piggybacking my answer to T1 I want to go back to therapy. I was only able to go about 5 months the year of my diagnosis but it changed me and everything for the better. I can tell I need it for my relationship with my BT- we’ve got some stuff to work out the two of us! #btsm |
| Toph @IamTheToph @BTSMchat T3: I'm working on a project transforming my daughter's school library, donating my time and energy. I know 2020 might be the year I get surgery so I have this mental tic that pushes me to get things done *now*, before. I'm also doing more to make myself happy, new hobbies. #BTSM |
| Aaron @amhoov @adamhayden @CBlotner_ @BTSMchat @srajabi To put a positive spin on it, I think my academic background (engineering PhD) has prepared me to read the brain cancer research and be a more active participant in my care. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @amhoov @CBlotner_ @BTSMchat The sad truth is that nobody will ever truly understand who has not been in it from a patient or caregiver perspective. Even WITH the number bomb. Most around me are in denial now that I‘m so far out. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T3: T3: Looking ahead, what personal goals for 2020 are you excited about and how do you plan to accomplish them? #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors Beautiful community! |
| OurBrainBank @ourbrainbank @BTSMchat T3: q of future gazing can be complicated for many of us living w terminal diagnosis. We can become experts at living in the here and now, and always able to accomplish more in real ‘real’ time! #BTSM |
| #BTSM chat @BTSMchat @Ailuj_Nostrebor That sounds super exciting! #btsm |
| Aaron @amhoov @MariahJaeee @BTSMchat I also want to go back to therapy (I went long before my BT). I’ve gotten a recommendation from the social worker assigned to me at MGH. #btsm |
| Charlie Blotner @CBlotner_ @srajabi @amhoov @BTSMchat Look at Samira "saying no" tonight! ♥️ #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T3: (part 2) on a personal/political (If that’s ok) note I’d love to get out and support with my vote candidates who have a patient focused approach to healthcare as one of their platforms so that the future may be better for all! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: More collaboration w other sites (such as @wakehealth #neuroonc), more trials, more qol measures. I’m very much into better characterizing #H3K27m tumors #btsm https://t.co/bn4ODATWwl |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat It will be amazing! #BTSM |
| Hina Saeed, MD @HinaSaeedMD @BTSMchat T3: join a gym or at least start exercising regularly #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc @Sabine_NJ @amhoov @CBlotner_ @BTSMchat What do you mean by number bomb, Sabine? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @AkankshaMD @BTSMchat 🤗💃💃💃✨✨✨ #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T3: Excited to finish enrolling my pilot clinical trial. While I continue to treat the patients on this trial, I am hoping the data can improve immune therapy for future patients. Stretch goal - open or at least propose an even better trial with data from the 1st in 2020 #BTSM |
| Aaron @amhoov @subatomicdoc @Sabine_NJ @CBlotner_ @BTSMchat I think she’s referring to that phrase in one my tweets - explicitly throwing out prognosis stats for GBM to help people understand how devastating the diagnosis is. #btsm |
| #BTSM chat @BTSMchat Almost time for our final question. Let’s get ready for T4 in just 1 minute! #BTSM |
| SeleneSeltzer @SeleneSeltzer @subatomicdoc @AshleySumrallMD @BTSMchat T3: I forgot to include that too! Guess that's my answer for #3 for goals: more + more consistent self-care #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat T3: Sort my life out a bit, get projects (including my health) in better order. #btsm |
| Matt Cotcher @MLCotcher Catching up & skimming through responses that I’ll read thoroughly later, but my first reaction is to be incredibly proud that this group’s struggles are very much like healthy folks - parenting, finances, etc. it’s tremendous effort to set aside the disease so kudos! #BTSM |
| Heather 🇺🇸 @ZHeatherChamp @LisaJaayyy @Lifeiskitsch @HeadfortheCure Gah you both are amazing!!!!!!!!!!!!!!!!!! I’d almost do anything* to be able to do stuff like that! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @amhoov @adamhayden @CBlotner_ @BTSMchat @srajabi Same! Especially since English is not my native language. Reading and understanding Research papers (although not in my own field) felt empowering. #btsm |
| Aaron @amhoov @MariahJaeee @BTSMchat Thanks! I may have to go out-of-pocket, but I know from past experience that it’s worth it. #btsm |
| #BTSM chat @BTSMchat T4: Let’s take a look in our crystal balls! What is the one breakthrough in brain tumor treatment and/or care you wish for in 2020? #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc @amhoov @Sabine_NJ @CBlotner_ @BTSMchat Ah, got it. Sorry to hear that. No one is a stat. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @LisaJaayyy @HeadfortheCure Yessssss!!! Thiiiiiis!!! #btsm |
| Karen Derris @KarenDerris @amhoov @MariahJaeee @BTSMchat I need to find a therapist. Pronto. Having hard time finding a therapist who specializes in terminal illness #BTSM |
| Matthew Katz, MD 🟦 @subatomicdoc RT @BTSMchat: T4: T4: Let’s take a look in our crystal balls! What is the one breakthrough in brain tumor treatment and/or care you wish for in 2020? #BTSM |
| Emily McIntosh @mcintose @BTSMchat T3. I sure hope to finally defend my PhD and start a career! #BTSM |
| Aaron @amhoov @Sabine_NJ @CBlotner_ @BTSMchat I completely understand. I look totally healthy and still have my sense of humor. People think everything is A-OK. #btsm |
 | Enlightening Results 💡 @GraceCordovano @Lifeiskitsch @BTSMchat I’m so sorry. This feels so heavy to have to carry. I’m glad you shared this with us here. But know that so many are grateful to hear your voice here. You are a light for many ✨🌟 #btsm |
| Edjah Nduom, MD (he/him) @EKNduom RT @amhoov: @CBlotner_ @BTSMchat Also, I’m not always certain how well my colleagues understand the gravity of my diagnosis/prognosis. I don’t just wanna drop a number bomb on them, but I feel like if they knew, they’d be more considerate. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD RT @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. |
| Matthew Katz, MD 🟦 @subatomicdoc @SeleneSeltzer @AshleySumrallMD @BTSMchat Yes! Always important. If I don't stay in decent shape, I can't help my family or my patients. #btsm |
| Enlightening Results 💡 @GraceCordovano @mcintose @BTSMchat You’ve got this! #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @BTSMchat T4 Easily accessible support for carers and families #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: T4: T4: Let’s take a look in our crystal balls! What is the one breakthrough in brain tumor treatment and/or care you wish for in 2020? #BTSM |
| Aaron @amhoov T3: Start doing Crossfit again. Maybe? #btsm |
| Heather 🇺🇸 @ZHeatherChamp @BTSMchat A4: RARE AND BENIGN BRAIN TUMOR e v e r y t h i n g (sorry to shout. I don’t know how else to get these types in any convos, you know?) #btsm |
| KateWhy @KattyBatty1 @BTSMchat T3: the teen plans to get his license and keep looking at colleges. I the parent will try to stay calm through all of this. #BTSM |
| Mariah Jae @MariahJaeee @BTSMchat T4: besides the obvious cure I’d love to see advancements in immunotherapy- it seems so hopeful! I’d settle for contrast that doesn’t make me want to vomit as a great advancement I’d celebrate! #btsm |
| Heather 🇺🇸 @ZHeatherChamp @Lifeiskitsch @BTSMchat Same. Same. Same. #btsm |
| 🧠Julia Robertson @Ailuj_Nostrebor @ZHeatherChamp @BTSMchat 100% agree #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T3: I can’t believe I crafted the q’s and don’t have a personal goal (yet) for 2020...🤪😂 Well I guess I have 30 days to come up with one. Many great inspirations from tonight’s chat. #btsm |
| I Live Now Rachel 💎 @KickBrainTumors T4: I wish for a breakthrough where reoccurring brain tumors don’t come back. It’s over. No repeat lingering...tumors #BTSM 2020 HOPE🧠 |
| Enlightening Results 💡 @GraceCordovano @KarenDerris @amhoov @MariahJaeee @BTSMchat It’s so hard to find the right therapist yet so incredibly important & necessary. I hope you all can connect with someone soon. #btsm |
| OurBrainBank @ourbrainbank @BTSMchat T4: everyone diagnosed w #gbm is offered 2nd opinion. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T4: T4: Let’s take a look in our crystal balls! What is the one breakthrough in brain tumor treatment and/or care you wish for in 2020? #BTSM |
| Karen Derris @KarenDerris @BTSMchat T3: I’m hoping to finish the book I’m writing. I almost have a polished draft. Afraid to send it to my editor. Dedicated so much of my little energy to it. What if it’s no good and I wasted my precious time?#BTSM |
| Aaron @amhoov @Curtis1158 Thanks, Stephen. I’ve got nearly all the positives I could have going for me (age, health, methylation, etc.). I’m determined to be an outlier as well! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @GraceCordovano @BTSMchat Eh, it’s fine. It’s not bad. Just one of them life journey questions. Why am I here? Why this & not that? Ruminating over choices I made that caused my path go this way & not that-a-way... what coulda/woulda/shoulda v. What Is, etc #btsm |
| Charlie Blotner @CBlotner_ @KarenDerris @amhoov @MariahJaeee @BTSMchat There are a variety of therapist directories online, and many that are specific to additional demos, ie for LGBTQ+ clients, for POC, adoptees, and more if anyone is interested in checking them out. Your hospital's social worker should be able to provide more info too. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: More trials. More $ for trials. #btsm |
| Toph @IamTheToph @BTSMchat T4: Totally honest, I don't even know what to wish for, because reading about the treatments, medicines and surgeries, it all feels like science fiction already. I'd wish for no more deaths, if not that, then no more pain. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat T4: My wish is we find something super easy that we can do with existing therapies that ends up making a huge difference for patients. Related and specific - I hope that we validate the neoadjuvant checkpoint inhibition signal (can share reference for Dr Cloughesy's work). #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat we just haven’t made much progress. Over the last 2y in #gbm, checkmate 143, 498, 548 were neg. Abbvie’s #ABT414 was neg. Toca511 was disappointing. For GBM, trials are scarce right now. Quick search of active interventional ph 2 or 3 trials in US = 80 trials, but...1/2 #btsm |
| Aaron @amhoov @EKNduom @BTSMchat Agreed! I’d love to see clinical studies of things like ketogenic diet in humans, not just pre-clinical mouse models and in-vitro cell cultures. #btsm |
| Enlightening Results 💡 @GraceCordovano @BTSMchat T4) No one is ever left feeling alone. Connecting patients to the right caregiver & care at the right time. Including #PalliativeCare earlier. Connecting patients & carepartners to peer health support out of the gate. #btsm |
| RLB @RLaBArch @BTSMchat T2: so this is a PTSD related thing I’m sure. The 20 minutes before surgery were the worst of my life. The doctors paraded my family members in one by one to say good bye, and it honestly felt like that. I haven’t forgotten those exchanges and it’s pretty haunting. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T4// I want to know WHY or WHAT or HOW & WHEN brain tumors are activated. So I can know. And so people stop telling me I ate the wrong damn food. Or maybe I did. I’d just like to know what is the TRIGGER... my trigger. #BTSM (1/2) |
| Edjah Nduom, MD (he/him) @EKNduom @BTSMchat More lay-ish interview on the subject: https://t.co/8m09W7semd #BTSM |
| Emily McIntosh @mcintose @BTSMchat T4. Culture change. Eliminate barriers (ego, financial, naivety) for neurosurgeons to re-refer patients to real specialists/oncology neurosurgeons. #BTSM I'd love breakthroughs in treatments (immunotherapy & more), but I chose something that could absolutely be done in 2020. |
| St_Molly_AgentofChaos @Lifeiskitsch RT @EKNduom: @BTSMchat T4: @BTSMchat T4: My wish is we find something super easy that we can do with existing therapies that ends up making a huge difference for patients. Related and specific - I hope that we validate the neoadjuvant checkpoint inhibition signal (can share reference for Dr Cloughesy's work). #BTSM |
| #BTSM chat @BTSMchat Closing in on the hour! Any final T4. thoughts? What is the one breakthrough in brain tumor treatment and/or care you wish for in 2020? #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat 2/2 many are not great. I count maybe 15-20 options for newly dx #gbm. #btsm https://t.co/vC3xiOe8Lc |
| Edjah Nduom, MD (he/him) @EKNduom @mcintose @BTSMchat T4: We can do this! #BTSM |
| KateWhy @KattyBatty1 @BTSMchat T4: it’s not a breakthrough but if it can help more folks would like to see florescent guided resections become more common. #btsm |
| OurBrainBank @ourbrainbank @EKNduom @BTSMchat Love this! And we find best way to design things that r super-easy is to design them around the partner #BTSM |
 | ScottyBueno @heypunko @BTSMchat T3- Good golly, I want to be like Miss Molly and get in the gym to get stronger. #btsm |
 | Ginger Riley ~Eternal Optimist~ @gingerly21 RT @NCICancerStats: According to 2012-2016 data, the percent of brain and other nervous system cancer deaths is highest among people aged 65-75. Find more brain cancer stat facts and resources here: https://t.co/L2LuXfQkWz #BTSM @BTSMchat https://t.co/DRyTBA1zC2 |
| SeleneSeltzer @SeleneSeltzer RT rephrase: #Ptexp wishes: #QoL over quantity;⬆️⬆️resources for person w/#seriousillness #btsm + family #carepartners to explain/understand #palliativecare. ➡️Good start = https://t.co/kmu7zGcWLO |
| SeleneSeltzer @SeleneSeltzer RT @GraceCordovano: @BTSMchat T4) No one is ever left feeling alone. Connecting patients to the right caregiver & care at the right time. Including #PalliativeCare earlier. Connecting patients & carepartners to peer health support out of the gate. #btsm |
| #BTSM chat @BTSMchat As we begin to close, hey, super shout out to @Sabine_NJ for riding along tonight, crafting the prompts, and getting my back on likes and comments! ❤️ -@adamhayden #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: As we begin to close, hey, super shout out to @Sabine_NJ for riding along tonight, crafting the prompts, and getting my back on likes and comments! ❤️ -@adamhayden #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T4//.2// To reiterate @Sabine_NJ, I’d like to see QOL prioritized over Quantity all across board, every part of life— healthy or sick. More understanding of palliative care. Life is always terminal, so let’s put quality over quantity forever, for all. #btsm @endwellSF |
| #BTSM chat @BTSMchat That’s a wrap. Thank you for joining the #BTSM tweetchat tonight. Your time, tweets and comments are greatly appreciated! |
| Aaron @amhoov Not on any T, but this is my first BTSM chat, and I’m super grateful for all of you sharing! I’ll certainly be back for more! #btsm |
| #BTSM chat @BTSMchat Mark your calendars for next #BTSM chat: Sunday, January 5th at 6pm PT/9pm ET. #BTSM |
| Toph @IamTheToph @BTSMchat @Sabine_NJ @adamhayden Thank you both for leading this! #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat @Sabine_NJ @adamhayden Team work makes the dream work! 🧠💪😍 #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat Looking at @TheLizArmy’s poster and reflecting on #SNO19, how do we get more ppl involved? #btsm https://t.co/t71YdDqNaf |
| Enlightening Results 💡 @GraceCordovano RT @BTSMchat: Mark your calendars for next #BTSM chat: Mark your calendars for next #BTSM chat: Sunday, January 5th at 6pm PT/9pm ET. #BTSM |
| Enlightening Results 💡 @GraceCordovano RT @Lifeiskitsch: @BTSMchat T4//.2// To reiterate @Sabine_NJ, I’d like to see QOL prioritized over Quantity all across board, every part of life— healthy or sick. More understanding of palliative care. Life is always terminal, so let’s put quality over quantity forever, for all. #btsm @endwellSF |
| #BTSM chat @BTSMchat Looking for more? Tune in to Brain Tumor Support Conversations—virtual support group w/@lisaoleary524 & @adamhayden (🙋🏼♂️👋) on Sun, December 15 at 4pPT/7pET. #BTSM https://t.co/KUdwAanKrN |
| Erica Robinson @eleighrobs @amhoov @Sabine_NJ @CBlotner_ @BTSMchat Same. I have heard "Oh please, you don't look like anything happened" and my least fav, "that's not even the bad kind" of brain tumor. #BTSM |
| #BTSM chat @BTSMchat @amhoov We are glad you found us and look forward to having you with us in the future! #btsm |
| SeleneSeltzer @SeleneSeltzer RT #ptexp wishes: easily accessible support for #carers + families |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Looking for more? Tune in to Brain Tumor Support Conversations—virtual support group w/@lisaoleary524 & @adamhayden (🙋🏼♂️👋) on Sun, December 15 at 4pPT/7pET. #BTSM https://t.co/KUdwAanKrN |
| Edjah Nduom, MD (he/him) @EKNduom RT @AshleySumrallMD: @BTSMchat Looking at @TheLizArmy’s poster and reflecting on #SNO19, how do we get more ppl involved? #btsm https://t.co/t71YdDqNaf |
| Mariah Jae @MariahJaeee @BTSMchat Bye everyone! Thanks as always for letting me digitally drop my baggage on you for an hour! The only other people who know how to carry it 💜 (where’s the gray brain tumor heart apple???) #btsm |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: Mark your calendars for next #BTSM chat: Mark your calendars for next #BTSM chat: Sunday, January 5th at 6pm PT/9pm ET. #BTSM |
| Edjah Nduom, MD (he/him) @EKNduom RT @amhoov: Not on any T, but this is my first BTSM chat, and I’m super grateful for all of you sharing! I’ll certainly be back for more! #btsm |
| Edjah Nduom, MD (he/him) @EKNduom RT @BTSMchat: That’s a wrap. Thank you for joining the #BTSM tweetchat tonight. Your time, tweets and comments are greatly appreciated! |
| #BTSM chat @BTSMchat @RLaBArch @NBTStweets Wow, that's an accomplishment many could not do without having had brain surgery! #btsm |
| #BTSM chat @BTSMchat Remember to use the #BTSM hashtag all month long for interesting healthcare/leadership posts, pics, articles and news. |
| St_Molly_AgentofChaos @Lifeiskitsch @amhoov Yessss! So glad you joined us! #btsm |
| Matthew Katz, MD 🟦 @subatomicdoc @BTSMchat Thanks for another great chat, I'm glad I was able to join you all tonight. And thanks @adamhayden for moderating! #btsm |
| #BTSM chat @BTSMchat Shout out the entire #BTSM organizing team: @TheLizArmy @CBlotner_ @adamhayden @Sabine_NJ @JeremyPivor @lisaoleary524 ✌🏼❤️🧠 |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: Shout out the entire #BTSM organizing team: Shout out the entire #BTSM organizing team: @TheLizArmy @CBlotner_ @adamhayden @Sabine_NJ @JeremyPivor @lisaoleary524 ✌🏼❤️🧠 |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD Great option for support! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch For the record, when I’m feeling salty, I enjoy reminding the Healthy folks that they’re going to die, too. It’s OK! Death is just a thing that happens— birds do it, bees do it, even educated MDs do it (I don’t think that’s how the song goes, but I’m sticking with it)! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: As we begin to close, hey, super shout out to @Sabine_NJ for riding along tonight, crafting the prompts, and getting my back on likes and comments! ❤️ -@adamhayden #BTSM |
| I Live Now Rachel 💎 @KickBrainTumors T4: May we all have long lives. Finish out this year strong. Go into 2020 reaching our goals and be where we want to be. Take steps. Just step! #BTSM I need to SLEEP more. Insomnia less. Set time to shut everything down🛌Goodnight everyone. What s great Chat! |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat @TheLizArmy @CBlotner_ @adamhayden @Sabine_NJ @JeremyPivor @lisaoleary524 Love you guyses! #btsm |
| #BTSM chat @BTSMchat This week’s Top Influencers of #BTSM 👉 @BTSMchat @TheLizArmy @adamhayden @Sabine_NJ @NBTStweets @NeuroOnc https://t.co/vNmliXXzBJ via @symplur |
| SeleneSeltzer @SeleneSeltzer RT @Lifeiskitsch: @BTSMchat T4//.2// To reiterate @Sabine_NJ, I’d like to see QOL prioritized over Quantity all across board, every part of life— healthy or sick. More understanding of palliative care. Life is always terminal, so let’s put quality over quantity forever, for all. #btsm @endwellSF |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: @IamTheToph We like to call our loved ones “care partners,” we’re all in this together! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: This week’s Top Influencers of #BTSM 👉 @BTSMchat @TheLizArmy @adamhayden @Sabine_NJ @NBTStweets @NeuroOnc https://t.co/vNmliXXzBJ via @symplur |
#BTSM content from Twitter.