#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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| Profile | Tweet |
|---|---|
 | Kadrin Wilfong, MD @KadrinWilfong RT @BTSMchat: This article is one of the inspirations behind tonight’s chat topic: “Where is the road map for #glioblastoma?” https://t.co… |
 | BTSM chat | #btsm @BTSMchat Welcome, welcome, welcome to #BTSM chat! Please remember to use the hashtag (#BTSM) in order to take part in tonight’s conversation. #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community and is not owned by any organization. |
 | Dr. Sabine Schwab @Sabine_NJ RT @BTSMchat: Welcome, welcome, welcome to #BTSM chat! Please remember to use the hashtag (#BTSM) in order to take part in tonight’s conver… |
| BTSM chat | #btsm @BTSMchat Let’s start w/intro’s while we wait for the chat to start. Who are you? What perspective do you bring to the conversation tonight? Tweet #BTSM if you’re only here to listen. Welcome everyone! |
 | Participatory Med @S4PM RT @TheLizArmy: Hey friends: Expect increased tweet activity from me during the next hour. I am participating in the #BTSM tweet chat. We'r… |
 | Liz Salmi @TheLizArmy @heypunko Glad to see you lurking, Scott! #BTSM |
 | GoodGollyMsMolly @Lifeiskitsch @BTSMchat Present. Molly. Grade 3 Ana Astrocytoma. Craniotomy 11/16. Radiation 11-12/16. Chemo 2017. Finished 12/17. Still alive. #btsm |
 | Harley Helping Hands @HarleyHelps #BTSM Hi. Here from Chicago. We support adults with brain cancer who live in Illinois. |
 | Carolyn Pointer @CarolynAPointer @CBlotner_ @BTSMchat I agree - I work with a lot of doctors am both grateful for all of their help, and feeling a bit guilty over the health equity side of things. #btsm |
 | Lisa O'Leary @lisaoleary524 Hi friends. Lisa here. 34 y/o GBM widow, lost husband Patrick 7/11/2015. Advocate for @nbtstweets. #btsm |
 | ✌🏼Peacemomma 🍑 @peacemomma67 @BTSMchat #BTSM I’m a brain tumor survivor since July 5, 2006 |
| Liz Salmi @TheLizArmy @BTSMchat Liz here. Living w/grade II astrocytoma for almost 10yrs! Blogger. Patient turned researcher. Big fan of transparency and access to health records. #BTSM |
| BTSM chat | #btsm @BTSMchat Clinical, academic, research, or industry professionals: Feel free to share credentials and affiliations. Thanks for joining! #BTSM |
 | Ishwaria Subbiah, MD MS @IshwariaMD @BTSMchat Hi all. Palliative Care and med onc physician in Houston, TX. I practice symptom management for patients w going through #cancer treatment as well as their caregivers/families. #btsm |
 | Sean Sachdev, MD @SeanSachdevMD @BTSMchat hi all, neuro radiation oncologist from Chicago/Northwestern, hoping to listen in and hear pt perspectives #btsm |
 | Karen DeBonis @KarenDeBonis Hello. Happy to be here. My son was diagnosed 20 years ago at age 11 with a pylocytic astrocytoma. It was undiagnosed for 3 years, then grossly misdiagnosed for several months. It was a long and difficult recovery, but now at age 31, he's doing great! #BTSM |
| Liz Salmi @TheLizArmy @lisaoleary524 @NBTStweets Hey Lisa! Glad to have you in the community! #BTSM |
 | Erica Robinson @eleighrobs Hey everyone. Erica here, listening tonight. Survivor, Team Captain, and Advocate for @NBTStweets #BTSM |
| BTSM chat | #btsm @BTSMchat Tonight we are talking about “quality of life” w/special guest Dr. @BethanyKwan from @CUMedicalSchool. (Sometimes "quality of life" is abbreviated as the acronym QoL.) #BTSM |
 | ResolutionCare @MichaelDFratkin Family calls but I wanted to send a little love to my friends and teachers .@BTSMchat #BTSM https://t.co/pmfzcvNMa9 |
 | Charlie Blotner @CBlotner_ @BTSMchat Hi all! Charlie, MSW student in Seattle, here. 5+ years post awake cranio for grade II astrocytoma. #btsm |
| Harley Helping Hands @HarleyHelps Happening NOW #BTSM https://t.co/fwJ2qdqnod |
 | Melanie Kabo @MelanieKabo I'm eating and listeninging, I'll join in soon, #btsm |
| Harley Helping Hands @HarleyHelps RT @BTSMchat: Tonight we are talking about “quality of life” w/special guest Dr. @BethanyKwan from @CUMedicalSchool. (Sometimes "quality… |
| Liz Salmi @TheLizArmy @IshwariaMD @BTSMchat Thanks for joining tonight, Dr. Subbiah! #btsm |
 | Amanda Nottke @amanda_nottke Hello, I'm Amanda. I'm an ASK Scientist at Cancer Commons. I work with patients and their families to answer questions and find treatment options. Here to listen tonight #btsm |
 | The Brain Institute of America @brainamerica glad to be here @brainamerica #btsm |
| BTSM chat | #btsm @BTSMchat Input from tonight’s tweet chat will help inform the design of a research question by the Brain Cancer Quality of Life Collaborative, funded by @PCORI. https://t.co/ITmmqD28Ov #BTSM |
 | Shirley Otis-Green @sotisgreen RT @BTSMchat: Let’s start w/intro’s while we wait for the chat to start. Who are you? What perspective do you bring to the conversation ton… |
| BTSM chat | #btsm @BTSMchat The purpose of this discussion is to find out WHAT MATTERS MOST TO YOU when making decisions about your healthcare. There are no wrong answers. #BTSM |
 | Sheriff Tennant @brianatennant @BTSMchat Dx 2010 Husband, father of 4, public servant #btsm |
| The Brain Institute of America @brainamerica #BTSM |
| Harley Helping Hands @HarleyHelps RT @BTSMchat: Input from tonight’s tweet chat will help inform the design of a research question by the Brain Cancer Quality of Life Collab… |
 | (((Matthew Katz, MD))) @subatomicdoc @BTSMchat Good evening! Matt Katz, radiation oncologist in Massachusetts. Glad to be able to join tonight #btsm |
 | Bethany Kwan @BethanyKwan @BTSMchat @CUMedicalSchool I'm delighted to join you all tonight to learn about #qualityoflife for those with brain tumors - and their families and care partners #BTSM |
| The Brain Institute of America @brainamerica #BTSM . interesting topic tongiht |
 | Claire Snyman @clairehsnyman RT @BTSMchat: Tonight we are talking about “quality of life” w/special guest Dr. @BethanyKwan from @CUMedicalSchool. (Sometimes "quality… |
 | Hedy Wald @hedy_wald Hope to follow/share in Tweetchat but busy tonight w/caregiving responsibility4spouse w GBM, trying2help his quality of life #QOL #glioblastoma #cancer #btsm |
| Charlie Blotner @CBlotner_ @ZHeatherChamp Nope, right on time! #btsm |
| BTSM chat | #btsm @BTSMchat And finally... Input from tonight’s chat will go through a process called “qualitative analysis” by some of our partners at @CUMedicalSchool and help design a research question to help ppl dealing w/brain tumors. #BTSM Ready? |
| Shirley Otis-Green @sotisgreen Hi I’m Shirley-a Palliative Care Social Workers and colleague with many on this chat! #BTSM #qol |
| Charlie Blotner @CBlotner_ @heypunko Great to have you here in any capacity, Scott. #btsm |
| Carolyn Pointer @CarolynAPointer @BTSMchat #btsm I’m a patient with oligodendroglioma II. Post surgery and radiation, likely starting chemo next week. |
| (((Matthew Katz, MD))) @subatomicdoc @ZHeatherChamp Hi Heather, how are you? #btsm |
| Dr. Sabine Schwab @Sabine_NJ #sabine365/97: Brain Tumor tweet chat going on now - join me and my fellow bt friends from across the nation! #btsm #sabine365 |
| Liz Salmi @TheLizArmy @KarenDeBonis So glad you are here! And wow, incredible news about your son. #btsm |
 | Adam Hayden @adamhayden My best wishes for an engaging & informative #btsm chat tonight. I’ll miss it, but I look forward to catching up w the transcript. ✌️❤️🧠 |
 | Terri Armstrong @Tsarmstrong01 #BTSM -here to listen! NP and outcomes researcher https://t.co/RjwBZFxFEz |
| BTSM chat | #btsm @BTSMchat Tonight’s chat will be organized by themes. We will announce FOUR topics (T1 T2 etc). Please label your answers with T1, T2, etc to make transcript easier to follow. #BTSM |
| (((Matthew Katz, MD))) @subatomicdoc @ZHeatherChamp Sounds good! #btsm |
| BTSM chat | #btsm @BTSMchat RT @Sabine_NJ: #sabine365/97: Brain Tumor tweet chat going on now - join me and my fellow bt friends from across the nation! #btsm #sabine3… |
| Liz Salmi @TheLizArmy @ZHeatherChamp Just starting! #BTSM |
| BTSM chat | #btsm @BTSMchat About to post Topic T1… #BTSM |
| BTSM chat | #btsm @BTSMchat RT @KarenDeBonis: Hello. Happy to be here. My son was diagnosed 20 years ago at age 11 with a pylocytic astrocytoma. It was undiagnosed for… |
| Liz Salmi @TheLizArmy RT @BethanyKwan: @BTSMchat @CUMedicalSchool I'm delighted to join you all tonight to learn about #qualityoflife for those with brain tumors… |
| Bethany Kwan @BethanyKwan RT @BTSMchat: Tonight’s chat will be organized by themes. We will announce FOUR topics (T1 T2 etc). Please label your answers with T1, T… |
| BTSM chat | #btsm @BTSMchat @clairehsnyman Welcome, Claire! Don't forget to add #btsm to the end of your tweets (or use https://t.co/XkSgKVNZAQ) so that others can see them as well. |
| BTSM chat | #btsm @BTSMchat T1 // When you hear the phrase “quality of life,” what does that mean to you as a brain tumor patient, care partner, or healthcare professional? #BTSM #qualityoflife |
| Charlie Blotner @CBlotner_ @ZHeatherChamp Excited to gain some insight from everyone here tonight. How about you? #btsm |
| Liz Salmi @TheLizArmy The real MVP: @hedy_wald, busy care partner who is still weighing in on #BTSM tonight. 🙏 https://t.co/h6LL9W4uSA |
| Claire Snyman @clairehsnyman @BTSMchat #btsm I forget every time 😂 on tchat now. |
| Hedy Wald @hedy_wald TY @lauren_kuwik This kind of support helps caregiver QoL #btsm https://t.co/6wZe0WfXma https://t.co/lcPZm8mH7F |
| Liz Salmi @TheLizArmy @CarolynAPointer @BTSMchat Wow! When were you diagnosed? #BTSM |
| BTSM chat | #btsm @BTSMchat RT @TheLizArmy: The real MVP: @hedy_wald, busy care partner who is still weighing in on #BTSM tonight. 🙏 https://t.co/h6LL9W4uSA |
| (((Matthew Katz, MD))) @subatomicdoc RT @BTSMchat: T1 // When you hear the phrase “quality of life,” what does that mean to you as a brain tumor patient, care partner, or healt… |
| Charlie Blotner @CBlotner_ @sotisgreen Great to have you joining us tonight, Shirley!! #btsm |
| Liz Salmi @TheLizArmy @Tsarmstrong01 Thanks for joining us! #BTSM |
| Liz Salmi @TheLizArmy RT @BTSMchat: T1 // When you hear the phrase “quality of life,” what does that mean to you as a brain tumor patient, care partner, or healt… |
 | Dr Vicky Forster @vickyyyf @BTSMchat Hi all, I'm a postdoc in pediatric cancer research @SickKidsNews, a cancer survivor (leukemia) and an advocate for late effects and survivorship research being patient-led. Looking forward to reading and learning #BTSM |
| Charlie Blotner @CBlotner_ @adamhayden We will patiently await your post-chat analysis...and analysis of the analysis. #btsm |
 | Rae DeRose @TheRaeLynne @BTSMchat Rae here, from Chicago. Was the primary caregiver to my husband, a #GBM patient who died in October 2017. Here to listen. #BTSM |
| Carolyn Pointer @CarolynAPointer @TheLizArmy @BTSMchat 4 months ago, but my dad had GBM so I knew just enough to panic. #btsm |
| GoodGollyMsMolly @Lifeiskitsch @BTSMchat T1// when I hear “QoL,” I kind of associate it with the terminal diagnosis... I ignore it initially because I associate it with the part where I’m going to take on the symptoms of dying... does that make sense? #BTSM |
| Charlie Blotner @CBlotner_ @TheRaeLynne Welcome, Rae! Have you joined us before, or is this your first chat? #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T1: When I was first diagnosed, I thought "quality of life" had something to do with making someone feel comfortable when they are really sick or dying. I didn't think it had anything to do w/me as a "healthy" person living w/a brain tumor. #btsm |
| (((Matthew Katz, MD))) @subatomicdoc @BTSMchat T1. As a healthcare professional, it means helping people find the best balance possible between symptoms/concerns from the disease and treatment(s). #btsm |
 | Amanda Haddock 🧬 @AmandaHaddock RT @TheLizArmy: The real MVP: @hedy_wald, busy care partner who is still weighing in on #BTSM tonight. 🙏 https://t.co/h6LL9W4uSA |
| Lisa O'Leary @lisaoleary524 T1 To me as care partner QOL refers to the aggressiveness of tx vs potential side effects and impact on ADLs. Disease mgmt vs function #btsm |
| GoodGollyMsMolly @Lifeiskitsch RT @TheLizArmy: @BTSMchat T1: When I was first diagnosed, I thought "quality of life" had something to do with making someone feel comforta… |
 | Jeannie Brandt @JeannieBrandt RT @GraceCordovano: This 👇🏻👇🏻 1000x. #Kindness in #cancer care. A must read for those in #oncology & #healthcare. #medonc #pallonc #radonc… |
| Liz Salmi @TheLizArmy @TheRaeLynne @BTSMchat Please share your experiences, Rae. I bet they are invaluable. Thank you for joining. #btsm |
| Ishwaria Subbiah, MD MS @IshwariaMD @BTSMchat A1: It shouldn’t be a choice - “get treatment” or “have quality of life.” Every new therapy has have both - efficacy and patient reported outcomes on #qualityoflife! #btsm |
| BTSM chat | #btsm @BTSMchat “Quality of life” goes beyond life expectancy and includes concepts related to: ✔️ physical ✔️ mental ✔️ emotional and ✔️ social functioning #BTSM |
| Charlie Blotner @CBlotner_ RT @BTSMchat: T1 // When you hear the phrase “quality of life,” what does that mean to you as a brain tumor patient, care partner, or healt… |
| (((Matthew Katz, MD))) @subatomicdoc RT @TheLizArmy: @BTSMchat T1: When I was first diagnosed, I thought "quality of life" had something to do with making someone feel comforta… |
| BTSM chat | #btsm @BTSMchat RT @lisaoleary524: T1 To me as care partner QOL refers to the aggressiveness of tx vs potential side effects and impact on ADLs. Disease mg… |
| Eve Isham @Eve_Isham Hello, im a care partner. Glad to see this. #BTSM |
| (((Matthew Katz, MD))) @subatomicdoc RT @BTSMchat: “Quality of life” goes beyond life expectancy and includes concepts related to: ✔️ physical ✔️ mental ✔️ emotional and ✔️ soc… |
| Liz Salmi @TheLizArmy @CarolynAPointer @BTSMchat My dad also had GBM! Were you able to enroll in any studies? #btsm |
| (((Matthew Katz, MD))) @subatomicdoc RT @IshwariaMD: @BTSMchat A1: It shouldn’t be a choice - “get treatment” or “have quality of life.” Every new therapy has have both - effic… |
 | Ramiro Bermudez-I.MD @davidbermudezi RT @IshwariaMD: @BTSMchat A1: It shouldn’t be a choice - “get treatment” or “have quality of life.” Every new therapy has have both - effic… |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat Same! #btsm |
 | Brain Tumour Fdn @BrainTumourFdn #btsm just checking in. Hope it’s a fabulous chat tonight |
| Liz Salmi @TheLizArmy RT @IshwariaMD: @BTSMchat A1: It shouldn’t be a choice - “get treatment” or “have quality of life.” Every new therapy has have both - effic… |
| Liz Salmi @TheLizArmy RT @BTSMchat: “Quality of life” goes beyond life expectancy and includes concepts related to: ✔️ physical ✔️ mental ✔️ emotional and ✔️ soc… |
| GoodGollyMsMolly @Lifeiskitsch @TheLizArmy @BTSMchat T1// very much same-same here. After my mom’s death last month (#pancreaticcancer), I have learned more about QoL. It isn’t as sad as I thought it was. #btsm |
| Bethany Kwan @BethanyKwan @Lifeiskitsch @BTSMchat Absolutely makes sense. Can you say more about what it means that you ignore it initially? #BTSM |
| Terri Armstrong @Tsarmstrong01 T1- life quality incompasses physical well being and symptoms, social, spiritual, and psychological well being. I believe it is relative and defined by the individual (ir I can’t tell you what defines your idea of life quality #BTSM https://t.co/L59buB7ICP |
| Dr. Sabine Schwab @Sabine_NJ RT @BTSMchat: T1 // When you hear the phrase “quality of life,” what does that mean to you as a brain tumor patient, care partner, or healt… |
| BTSM chat | #btsm @BTSMchat RT @IshwariaMD: @BTSMchat A1: It shouldn’t be a choice - “get treatment” or “have quality of life.” Every new therapy has have both - effic… |
| BTSM chat | #btsm @BTSMchat RT @Tsarmstrong01: T1- life quality incompasses physical well being and symptoms, social, spiritual, and psychological well being. I believ… |
| Brain Tumour Fdn @BrainTumourFdn #btsm https://t.co/SuJZCdOD5p |
| ✌🏼Peacemomma 🍑 @peacemomma67 @BTSMchat #BTSM #qualityoflife I like to say that it’s necessary to redefine what is a “norm” for you and find a different way of doing things that bring you joy and reflect the essence of the person you embody. |
| Shirley Otis-Green @sotisgreen Isn’t it interesting that it can seem that Medicine only attends to Quality of Life at the end of life?!? Ideally we’d pay attention to symptoms & suffering throughout illness (as Palliative Care does) @Lifeiskitsch @BTSMchat #hpm https://t.co/0OqMaDkK6V |
| Liz Salmi @TheLizArmy @Eve_Isham Welcome, Eve! Glad to see you on Twitter! #btsm |
| Brain Tumour Fdn @BrainTumourFdn #btsm https://t.co/EIdbXod5qa |
| BTSM chat | #btsm @BTSMchat RT @subatomicdoc: @BTSMchat T1. As a healthcare professional, it means helping people find the best balance possible between symptoms/conce… |
| BTSM chat | #btsm @BTSMchat RT @TheLizArmy: @BTSMchat T1: When I was first diagnosed, I thought "quality of life" had something to do with making someone feel comforta… |
| Amanda Haddock 🧬 @AmandaHaddock T1/ It means whatever makes that person happy. For my son, it meant going to school as much as possible and being with his friends. https://t.co/n9Kfx4cc0V |
| BTSM chat | #btsm @BTSMchat RT @Lifeiskitsch: @BTSMchat T1// when I hear “QoL,” I kind of associate it with the terminal diagnosis... I ignore it initially because I a… |
| Dr Vicky Forster @vickyyyf RT @IshwariaMD: @BTSMchat A1: It shouldn’t be a choice - “get treatment” or “have quality of life.” Every new therapy has have both - effic… |
| Sean Sachdev, MD @SeanSachdevMD @subatomicdoc @BTSMchat Very well put #btsm |
| BTSM chat | #btsm @BTSMchat Topic T2 is coming up… #BTSM |
| (((Matthew Katz, MD))) @subatomicdoc RT @Tsarmstrong01: T1- life quality incompasses physical well being and symptoms, social, spiritual, and psychological well being. I believ… |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat We shouldn't have to go through a death in order to learn a valuable lesson about achieving quality of life. #btsm 😞 |
| (((Matthew Katz, MD))) @subatomicdoc @sean_sachdev @BTSMchat Thanks! Good to see you at #btsm |
| Dr. Sabine Schwab @Sabine_NJ T1: For me, QoL means being able to live my life without the help of a caregiver. This outlook may change over time though. #btsm |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @Lifeiskitsch @BTSMchat Shouldn't have to, but in our death phobic culture, seems to be the only way for most. #btsm |
| BTSM chat | #btsm @BTSMchat @AmandaHaddock Please remember the hashtag! Your tweets won't be seen by others. #btsm |
| Carolyn Pointer @CarolynAPointer @TheLizArmy @BTSMchat My dad and I both enrolled in trials @theNCI. Lucky for me he did so, so when the local docs started talking astrocytoma I knew enough to call the experts at @theNCI to start with them and their fantastic care. #btsm |
| Claire Snyman @clairehsnyman RT @lisaoleary524: T1 To me as care partner QOL refers to the aggressiveness of tx vs potential side effects and impact on ADLs. Disease mg… |
| Hedy Wald @hedy_wald Agree. Assessment of treatment efficacy is not only are u alive but what kind of life are u living? #btsm Thankfully our team @DanaFarber attentive to that, needed2 d/c Clinl trials due to toxic effects, was tough tough https://t.co/IB0GTwsGMr |
| Liz Salmi @TheLizArmy RT @Tsarmstrong01: T1- life quality incompasses physical well being and symptoms, social, spiritual, and psychological well being. I believ… |
| GoodGollyMsMolly @Lifeiskitsch @BethanyKwan @BTSMchat I keep putting the thought aside, figuring it’s not time to deal with QoL because although my diagnosis is terminal— I’m “fine.” But after I lost my mom quickly to cancer (not brain), I realize QoL isn’t something to be sad about. It’s practical thoughts. #btsm |
| Shirley Otis-Green @sotisgreen #btsm https://t.co/ApxpcnHSBE |
| Liz Salmi @TheLizArmy @Tsarmstrong01 Well said, @Tsarmstrong01! #btsm |
 | Tracy @_mycrazy4 RT @BTSMchat: This article is one of the inspirations behind tonight’s chat topic: “Where is the road map for #glioblastoma?” https://t.co… |
| Charlie Blotner @CBlotner_ FYI for @BTSMChat participants - noticed I not all tweets are showing up in tchat. You might want to use another tab to search #btsm w/ too. #btsm |
| Shirley Otis-Green @sotisgreen So true #btsm @BTSMchat https://t.co/0xsj79Uuu9 |
| The Brain Institute of America @brainamerica #btsm agree liz however every case is vastly different. is there an issue in the field should we focus on personalized medicine? |
| Claire Snyman @clairehsnyman #btsm T1: QoL for me = being able to do things in my life that make me happy and fulfilled. This can change over time. |
| (((Matthew Katz, MD))) @subatomicdoc @TheLizArmy @Lifeiskitsch @BTSMchat Definitely. A serious diagnosis, brain tumor or another potentially life-threatening illness, can be a shock but also present the opportunity to focus on what's really important in our lives #btsm |
| BTSM chat | #btsm @BTSMchat T2 // Patients/care partners: Has your healthcare team talked with you about quality of life? What did that conversation "look" like, and what did that mean to you and your loved ones? Clinicians: How do you start these conversations? What are the goals? #BTSM |
| Hedy Wald @hedy_wald Maybe it's all abt how to be perceived as living with cancer and being able to do so vs dying from cancer #btsm https://t.co/Xs0IRII3pQ |
| GoodGollyMsMolly @Lifeiskitsch RT @BTSMchat: “Quality of life” goes beyond life expectancy and includes concepts related to: ✔️ physical ✔️ mental ✔️ emotional and ✔️ soc… |
| Amanda Haddock 🧬 @AmandaHaddock @BTSMchat It wouldn’t be a #btsm tweet chat if you weren’t reminding me of that!😉 |
| Charlie Blotner @CBlotner_ @BTSMchat T1: Initially, I thought about it as what do I want before I die. Now I realize that it's much more to do with the various attributes of my life that excite me and make life worth living - ie., how and why can I continue to do those things. #btsm |
| Brain Tumour Fdn @BrainTumourFdn From tonight’s tweet chat @BTSMchat #btsm https://t.co/xl1Hu2psQN |
| Claire Snyman @clairehsnyman RT @BrainTumourFdn: From tonight’s tweet chat @BTSMchat #btsm https://t.co/xl1Hu2psQN |
| (((Matthew Katz, MD))) @subatomicdoc RT @hedy_wald: Maybe it's all abt how to be perceived as living with cancer and being able to do so vs dying from cancer #btsm https://t.co… |
| Shirley Otis-Green @sotisgreen RT @CBlotner_: @BTSMchat T1: Initially, I thought about it as what do I want before I die. Now I realize that it's much more to do with the… |
| Liz Salmi @TheLizArmy @subatomicdoc @BTSMchat As a radiation oncologist (#radonc) do you have much time to have these conversations with patients? #btsm |
 | Lung Cancer Sux @LungCancerSux QoL meant getting hubby back out on his boat, doing what he needed to do to feel normal #btsm |
| BTSM chat | #btsm @BTSMchat RT @CBlotner_: FYI for @BTSMChat participants - noticed I not all tweets are showing up in tchat. You might want to use another tab to sear… |
| (((Matthew Katz, MD))) @subatomicdoc RT @CBlotner_: @BTSMchat T1: Initially, I thought about it as what do I want before I die. Now I realize that it's much more to do with the… |
| Shirley Otis-Green @sotisgreen RT @subatomicdoc: @TheLizArmy @Lifeiskitsch @BTSMchat Definitely. A serious diagnosis, brain tumor or another potentially life-threatening… |
| BTSM chat | #btsm @BTSMchat RT @Lifeiskitsch: @BethanyKwan @BTSMchat I keep putting the thought aside, figuring it’s not time to deal with QoL because although my diag… |
| Liz Salmi @TheLizArmy Co-sign! #btsm #btsmqol https://t.co/4U7WsFS1yH |
| BTSM chat | #btsm @BTSMchat RT @lisaoleary524: @TheLizArmy @Lifeiskitsch @BTSMchat Shouldn't have to, but in our death phobic culture, seems to be the only way for mos… |
| Bethany Kwan @BethanyKwan @Lifeiskitsch @BTSMchat Is it possible to be better than "fine" even with a terminal diagnosis? #BTSM |
| BTSM chat | #btsm @BTSMchat RT @TheLizArmy: @Lifeiskitsch @BTSMchat We shouldn't have to go through a death in order to learn a valuable lesson about achieving quality… |
| BTSM chat | #btsm @BTSMchat RT @AmandaHaddock: T1/ It means whatever makes that person happy. For my son, it meant going to school as much as possible and being with h… |
| Rae DeRose @TheRaeLynne @Tsarmstrong01 There's a balancing act, as well, between patient and care partner, as one's QoL definition might not match the other's QoL. #BTSM |
| (((Matthew Katz, MD))) @subatomicdoc RT @BTSMchat: T2 // Patients/care partners: Has your healthcare team talked with you about quality of life? What did that conversation "lo… |
| The Brain Institute of America @brainamerica #btsm . |
| Melanie Kabo @MelanieKabo QOL to me means keeping things as normal as possible for my children and my family, because stressing about them and worrying about the future does me no good, so we live in the now and enjoy life a much a possible. #btsm |
| Hedy Wald @hedy_wald Best possible. Fine phrasing #Btsm @subatomicdoc There is no straight line and QoL will suffer. Pts&families need2feel confident that medical team will do best possible w sx managmnt. Clinical trials need Follow up on what effects on QoL even if d/ced https://t.co/YPoJWiYemv |
| Sheriff Tennant @brianatennant @BTSMchat T2 My #1 question as it related to treatment decisions was “how is this going to affect my everyday life” #btsm |
| BTSM chat | #btsm @BTSMchat @ZHeatherChamp We're noticing that not all tweets show up on @tchatio these days - if you can have two windows open, it might be wise to have a tchat and a #btsm search tab window to cross check for other information! |
| The Brain Institute of America @brainamerica #btsm . do patients get reffered to a pych consult to help prepare? |
| Dr. Sabine Schwab @Sabine_NJ @BethanyKwan @Lifeiskitsch @BTSMchat IMO absolutely! I honestly have more better days now than before diagnosis. It's because I focus on living life purposely, find the happiness in little things, etc. #btsm |
| BTSM chat | #btsm @BTSMchat RT @brianatennant: @BTSMchat T2 My #1 question as it related to treatment decisions was “how is this going to affect my everyday life” #btsm |
| Liz Salmi @TheLizArmy @hedy_wald @DanaFarber I am curious to learn how you balance clinical trials/side effects w/maintaining quality of life goals. #btsm |
| Ishwaria Subbiah, MD MS @IshwariaMD @hedy_wald @DanaFarber Yes! There are many validated tools for patient reported outcomes to measure a person’s quality of life on a clinical trial - this info is very valuable in the clinic esp once the drug is approved when we are deciding together if that treatment is right for us! #btsm |
| GoodGollyMsMolly @Lifeiskitsch @TheLizArmy @BTSMchat Aside: My mom didn’t suffer. She died quickly. Blood clot in lungs, we think. It was less than an hour. She was declining, but still had plans, hope, a functioning brain. She had quality of life, at the end. Not hooked to endless tubes. #btsm |
| BTSM chat | #btsm @BTSMchat RT @clairehsnyman: #btsm T1: QoL for me = being able to do things in my life that make me happy and fulfilled. This can change over time. |
| BTSM chat | #btsm @BTSMchat RT @hedy_wald: Maybe it's all abt how to be perceived as living with cancer and being able to do so vs dying from cancer #btsm https://t.co… |
| Lisa O'Leary @lisaoleary524 T2 My husband's seizures were so difficult to manage that they the focus throughout tx. QOL only discussed near end of life. #btsm |
| Bethany Kwan @BethanyKwan @ZHeatherChamp @BTSMchat You can still share your perspective on what quality of life means to you! #BTSM Just use T1 |
| Dr. Sabine Schwab @Sabine_NJ RT @BTSMchat: T2 // Patients/care partners: Has your healthcare team talked with you about quality of life? What did that conversation "lo… |
| GoodGollyMsMolly @Lifeiskitsch RT @CBlotner_: @BTSMchat T1: Initially, I thought about it as what do I want before I die. Now I realize that it's much more to do with the… |
| The Brain Institute of America @brainamerica #btsm . the point being, as menally helathy as possible to continue life goals with GBM @brainamerica |
| Liz Salmi @TheLizArmy Quality of life changes over time, says @clairehsnyman. Ain't that the truth. #btsm https://t.co/enI1KGsmHD |
| Bethany Kwan @BethanyKwan @brianatennant @BTSMchat Great question! What was the response? #BTSM |
| (((Matthew Katz, MD))) @subatomicdoc @BTSMchat T2. My role varies depending upon the type of brain tumor a person I see has. Regardless, I try to start open-ended, asking about his/her understanding of the disease, what radiation may do (or not), and what her/his biggest concerns are. #btsm |
| Dr. Sabine Schwab @Sabine_NJ @BTSMchat No conversation about QoL (yet) for me. #btsm |
| BTSM chat | #btsm @BTSMchat If you are here tonight to just listen, please tweet “#BTSM” so we know you’re in the audience. 👋 |
| Bethany Kwan @BethanyKwan @hedy_wald @subatomicdoc If we were going to measure QoL as an outcome in a clinical trial for patients with brain tumors, what kinds of questions might we ask? #BTSM |
 | Mark VA2MM 📻 @markenvoyage @CarolynAPointer @BTSMchat #btsm also oligodendroglioma patient. Surgery, radiotherapy done, PCV chemotherapy 2/3 done. |
| Liz Salmi @TheLizArmy RT @subatomicdoc: @TheLizArmy @Lifeiskitsch @BTSMchat Definitely. A serious diagnosis, brain tumor or another potentially life-threatening… |
| Charlie Blotner @CBlotner_ RT @BTSMchat: T2 // Patients/care partners: Has your healthcare team talked with you about quality of life? What did that conversation "lo… |
| Hedy Wald @hedy_wald Indeed. Who can fathom such life devastation w barely any time to adjust?! It is not Alzheimer's nor elderly expected decline. It is one day having yr life blown up&QoL is how well u can pick up the pieces and reassemble some new strange configuration of a life #btsm https://t.co/Yy5LSXSt3v |
| Shirley Otis-Green @sotisgreen RT @Sabine_NJ: @BethanyKwan @Lifeiskitsch @BTSMchat IMO absolutely! I honestly have more better days now than before diagnosis. It's becau… |
 | Alli @jstagrlwithacat @BTSMchat I just saw this chat happening after btfc posted something, I'd like to follow along. I'm a 21 year survivor of an astrocytoma.#btsm |
| Dr Vicky Forster @vickyyyf Insightful discussion going on @BTSMchat currently. Hearing from patients, caregivers and the medical community on topics such as quality of life. Incredible example of patient input being taken into account by researchers. @BethanyKwan in this case. #btsm |
| GoodGollyMsMolly @Lifeiskitsch @BethanyKwan @BTSMchat Yes. I’d say so. I’m happier than I’ve ever been in my whole life— my diagnosis, my mom’s diagnosis, my mom’s death, my aunt’s diagnosis. My gratitude level despite it all is epic. I realize my purpose, my value— that I didn’t know before. Weird maybe, but true. #BTSM |
| Ishwaria Subbiah, MD MS @IshwariaMD @AmandaHaddock @BTSMchat Agreed! There are so many needs unique to the adolescent young adults with cancer. Recognizing these means you’re putting that patient (and their values) first!! #btsm #ayacancer #ayacsm |
| GoodGollyMsMolly @Lifeiskitsch RT @Sabine_NJ: @BethanyKwan @Lifeiskitsch @BTSMchat IMO absolutely! I honestly have more better days now than before diagnosis. It's becau… |
| Amanda Haddock 🧬 @AmandaHaddock @BTSMchat T2/ Maybe because he was “only” a teen, but most docs didn’t ask about his QoL. The ones who did are the ones we wanted to work with. #btsm |
| (((Matthew Katz, MD))) @subatomicdoc @brainamerica More common is distress screening at diagnosis and/or different points during evaluation process, to help determine need for support. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T2: I wouldn't say that we talk about QOL by naming it QOL, but I would say that we cover the psychosocial bases that would be deemed as such! #btsm |
| Melanie Kabo @MelanieKabo AA3....Day4 out of 5 on my 5th out of 6th round of Temador. Struggling to keep up tonight, and this is not what I think of as QOL. #btsm |
| Claire Snyman @clairehsnyman Totally! Changes with time, perspective, state of illness, diagnosis - so many factors to take into account. It really is an individual’s QoL in their mind that is key. #btsm https://t.co/buHo14I71X |
| Liz Salmi @TheLizArmy @BTSMchat T2: I don't remember my healthcare team using the phrase QOL, but I do remember my NP working hard to help me with the side effects of Temodar chemo (e.g., losing fertility, libido). That meant a lot to me. #btsm |
| BTSM chat | #btsm @BTSMchat RT @Sabine_NJ: @BTSMchat No conversation about QoL (yet) for me. #btsm |
| Rae DeRose @TheRaeLynne @BTSMchat T2 The discussions I recall related to treatment decisions: "If you choose X then Y might / could happen. . ." which was helpful. My husband often drove some of those conversations with his specific questions of "what does that look like, exactly?" #BTSM |
| Bethany Kwan @BethanyKwan @subatomicdoc @brainamerica Tell us more about distress screening! What does that look like? #BTSM |
| BTSM chat | #btsm @BTSMchat Topic T3 is coming up… #BTSM |
| Dr. Sabine Schwab @Sabine_NJ @MelanieKabo You can see the light...! Only 6 more days in total! Hope you'll feel better soon. #btsm |
| The Brain Institute of America @brainamerica #btsm . @brainamerica started a foundation to fund a variety of brain tumor related concerns, one of the is Qol |
| GoodGollyMsMolly @Lifeiskitsch @BTSMchat T2// I can’t remember. They probably did, but there’s so much at diagnosis— it’s hard to remember anything but diagnosis... @HenryFordNeuro #btsm |
| Charlie Blotner @CBlotner_ @Sabine_NJ No conversation bc the conversation hasn't spelled out/named aspects as QOL directly, or because it truly hasn't been had? #btsm |
| Liz Salmi @TheLizArmy @ZHeatherChamp @BTSMchat Topic 1 was: When you hear the phrase “quality of life,” what does that mean to you as a brain tumor patient, care partner, or healthcare professional? #BTSM |
| Shirley Otis-Green @sotisgreen Hopefully all have access to a wide range of supportive professionals to assist: Chaplains Social Workers Psychologists Psychiatrists Palliative Care specialists @brainamerica @BTSMchat #btsm Needs May change over course of illness https://t.co/SZJzr1RRpT |
| BTSM chat | #btsm @BTSMchat RT @subatomicdoc: @BTSMchat T2. My role varies depending upon the type of brain tumor a person I see has. Regardless, I try to start open-e… |
| Ishwaria Subbiah, MD MS @IshwariaMD @hedy_wald There is a changing tide in the drug approvals process where it’s necessary to show how a patient’s symptoms and quality of life change during treatment! It’s not just about how the tumor size is changing. Patient reported outcomes (PROs) matter! #btsm |
| GoodGollyMsMolly @Lifeiskitsch RT @subatomicdoc: @TheLizArmy @Lifeiskitsch @BTSMchat Definitely. A serious diagnosis, brain tumor or another potentially life-threatening… |
| BTSM chat | #btsm @BTSMchat RT @Sabine_NJ: @BethanyKwan @Lifeiskitsch @BTSMchat IMO absolutely! I honestly have more better days now than before diagnosis. It's becau… |
| Hedy Wald @hedy_wald I dk for everyone. With a #glioblastoma u r grateful 4 clinical trial chance4extended life so may help u sacrifice some QoL w hope that things will improve. In our case sxs were just too tough even w lowered drug dose so d/c was a must. #btsm https://t.co/Pqfw2PgxUc |
| BTSM chat | #btsm @BTSMchat RT @sotisgreen: Hopefully all have access to a wide range of supportive professionals to assist: Chaplains Social Workers Psychologists Psy… |
| BTSM chat | #btsm @BTSMchat RT @Lifeiskitsch: @BTSMchat T2// I can’t remember. They probably did, but there’s so much at diagnosis— it’s hard to remember anything but… |
| BTSM chat | #btsm @BTSMchat RT @TheRaeLynne: @BTSMchat T2 The discussions I recall related to treatment decisions: "If you choose X then Y might / could happen. . ." w… |
| BTSM chat | #btsm @BTSMchat RT @TheLizArmy: @BTSMchat T2: I don't remember my healthcare team using the phrase QOL, but I do remember my NP working hard to help me wit… |
| Amanda Haddock 🧬 @AmandaHaddock @IshwariaMD @BTSMchat It was eye-opening for me, because I would want to check off “bucket list” items, but he just wanted to be normal. #btsm |
| Dr. Sabine Schwab @Sabine_NJ @CBlotner_ Because it truly has not happened. My neuro team always refers to me as the "easy" patient. I plan on letting them know, however, whenever I think my QoL is compromised. #btsm |
| Shirley Otis-Green @sotisgreen RT @vickyyyf: Insightful discussion going on @BTSMchat currently. Hearing from patients, caregivers and the medical community on topics suc… |
| Terri Armstrong @Tsarmstrong01 T2-don’t think I ask lthat, but do - is there anything that is important to you or is important for us to know that I haven’t asked? end all visits w/that question; I ask about symptoms-(what makes better? Worse? How to last time; I ask caregivers for their thoughts #BTSM https://t.co/sGtRyIfZlf |
| The Brain Institute of America @brainamerica #btsm . @sabine_NJ great point. Qol really just started in oncology . . its a numbers game per dollar research money available |
| Hedy Wald @hedy_wald Yr wrk is so important @IshwariaMD I honor u tonight #btsm We need to be thinking carefully also on what is true informed consent as we enroll folks. These drug effects can be really tough https://t.co/RlbwWYaJ3t |
| (((Matthew Katz, MD))) @subatomicdoc @BethanyKwan @brainamerica Just like pain scales, there are distress screening tools. There are different validated instruments available. I don't have a citation for you offhand, unfortunately. #btsm |
| BTSM chat | #btsm @BTSMchat T3 // Patients & care partners: How do your personal values (spiritual, religious, scientific, etc.) factor into decisions about your health care? Clinicians: How do you help pts think about these values when making decisions? #BTSM |
| Shirley Otis-Green @sotisgreen RT @TheLizArmy: @BTSMchat T2: I don't remember my healthcare team using the phrase QOL, but I do remember my NP working hard to help me wit… |
| Charlie Blotner @CBlotner_ @TheLizArmy @BTSMchat Right, right. My neurologist in MI did a great job of working with me to manage side effects in ways that made the most sense to me and that she could clinically advise and recommend from experience. #btsm |
| Bethany Kwan @BethanyKwan @CBlotner_ @Sabine_NJ Good point, Charlie! What kinds of conversations would make you think - this is a conversation about how well I am functioning, how I'm feeling day to day? #BTSM |
| Rae DeRose @TheRaeLynne @TheLizArmy @BTSMchat Same about the language - I don't remember hearing QoL until later, but I DO remember discussions about chemo / radiation side effects. And QoL is a VERY abstract concept during the diagnosis and initial treatment stages. #BTSM |
| BTSM chat | #btsm @BTSMchat RT @Tsarmstrong01: T2-don’t think I ask lthat, but do - is there anything that is important to you or is important for us to know that I h… |
 | 𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea @BTSMchat T2 Nobody mentioned explicitly quality of life. #BTSM |
| Liz Salmi @TheLizArmy @jstagrlwithacat @BTSMchat Glad you found us! We're chatting right now about quality of life. #btsm |
| Hedy Wald @hedy_wald Not an expert in this stuff- R there validated surveys out there? Likely needs to be assessment of physical status plus impact on your ADLs mood goals etc #btsm https://t.co/D5pgqcyPBB |
 | Jeff Cee @jeff_ccc @BTSMchat Jeff here from Vancouver, Canada. Had my #glioblastoma craniotomy on 2017.05.01. Had radiation treatment & #temozolomide / #Temodal chemo tx with @BCCancer Agency. Grateful to be still alive. #BTSM |
| 𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea RT @TheLizArmy: @BTSMchat T2: I don't remember my healthcare team using the phrase QOL, but I do remember my NP working hard to help me wit… |
| (((Matthew Katz, MD))) @subatomicdoc @Lifeiskitsch @BTSMchat @HenryFordNeuro T2. There is a lot of information overload #btsm |
| Lisa O'Leary @lisaoleary524 T3 Ee considered value of participating in research to future pt population vs potential compromise of function #btsm |
| Dr. Sabine Schwab @Sabine_NJ RT @BTSMchat: T3 // Patients & care partners: How do your personal values (spiritual, religious, scientific, etc.) factor into decisions a… |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BethanyKwan @BTSMchat I really feel like I identify w/you in so many ways. #btsm |
| Sheriff Tennant @brianatennant @BTSMchat T2 On another note, to the clinicians here, your bedside manner and non-verbal communication is really important during QoL conversations. #btsm |
| The Brain Institute of America @brainamerica #btsm visit @brainamerica for more foundation details. or website https://t.co/1QfLAHhizi |
| Bethany Kwan @BethanyKwan @subatomicdoc @brainamerica I'm curious how the conversation around the use of screening tools goes - can you give an example? #BTSM |
| Lung Cancer Sux @LungCancerSux T2- our Neuro Onc asked hubby what he wanted to do most. We always visualize that goal! #btsm |
| Lisa O'Leary @lisaoleary524 T3 We considered value of participating in research to future pt population vs potential compromise of function #btsm |
| GoodGollyMsMolly @Lifeiskitsch @BTSMchat T3// they don’t. Not yet, anyway. #btsm |
| The Brain Institute of America @brainamerica #btsm . also heart, out there to all the patients and caregivers. courage |
| Bethany Kwan @BethanyKwan @hedy_wald Yes, validated surveys are out there - and we need help to find the right one, based on what people like you say is really meaningful #BTSM |
| Liz Salmi @TheLizArmy @MelanieKabo I want to LOL, but also I'm like, "Awwww, Melanie." #btsm |
| Liz Salmi @TheLizArmy @TheRaeLynne @BTSMchat He had great instincts! #btsm |
| Shirley Otis-Green @sotisgreen Healthcare providers too often forget how overwhelming a new diagnosis is to hear - we need to remember that as anxiety goes up retention goes down-and getting a BT diagnosis is STRESSFUL! @Lifeiskitsch @BTSMchat #btsm #hpm https://t.co/czjgLCiZOr |
| Charlie Blotner @CBlotner_ @BethanyKwan @Sabine_NJ What a great follow up question, Bethany! Qs that ask: What's important to you? What feels like it's going well, what feels like it's going not so well, and what do you want to change about those things? #btsm |
| Claire Snyman @clairehsnyman RT @CBlotner_: @BethanyKwan @Sabine_NJ What a great follow up question, Bethany! Qs that ask: What's important to you? What feels like it's… |
| Hedy Wald @hedy_wald So important @Tsarmstrong01 to turn yr head and look at the suffering caregiver sitting next2the patient & ask How r u doing? Also ask4caregiver lens on how pt is doing cuz there may B forgetfulness or minimization. The tired caregiver knows what's going on #btsm https://t.co/35PMcn3pmJ |
 | Connie Edelen, MD @ConnieEdelenMD @BTSMchat What’s important for me to know about you as a person? #btsm #pallonc |
| BTSM chat | #btsm @BTSMchat RT @brianatennant: @BTSMchat T2 On another note, to the clinicians here, your bedside manner and non-verbal communication is really importa… |
| BTSM chat | #btsm @BTSMchat RT @Lifeiskitsch: @BTSMchat T3// they don’t. Not yet, anyway. #btsm |
| Bethany Kwan @BethanyKwan How might the QoL of your loved ones factor into your health care decisions? #btsm |
| Terri Armstrong @Tsarmstrong01 T3-it’s hard. So much uncertainty and lack of control- try to impart information, so informed of risks and benefits to make choices, but know I can do better. #BTSM https://t.co/1d5dwbwYbJ |
| BTSM chat | #btsm @BTSMchat RT @sotisgreen: Healthcare providers too often forget how overwhelming a new diagnosis is to hear - we need to remember that as anxiety goe… |
| Liz Salmi @TheLizArmy Wow! Interesting insight on what QOL means to a parent vs. a teen. #btsm #btsmqol https://t.co/nQnwQVlGPT |
| Jeff Cee @jeff_ccc @BTSMchat T2: I don't recall the phrase of "QOL" came up specifically. But the side effects were clearly discussed pre-treatment. Having gone thru treatment, now I realized if #QOL was more emphasized to the patient, the process would have gone better. #BTSM |
| GoodGollyMsMolly @Lifeiskitsch RT @CBlotner_: @BethanyKwan @Sabine_NJ What a great follow up question, Bethany! Qs that ask: What's important to you? What feels like it's… |
| Charlie Blotner @CBlotner_ Yessss https://t.co/xsVhcMDBzU #hpm #btsm |
| Amanda Haddock 🧬 @AmandaHaddock @BTSMchat We tried to let David take the lead on his care decisions. He wanted to help other people - other patients, researchers, science in general. He had a strong, Christian belief system, but I think his willingness to help others was just him - not related to religion. #btsm |
| Rae DeRose @TheRaeLynne @BTSMchat T3 Even if we weren't calling it QoL, we focused on being able to continue doing the things that mattered to us. For Rob, that was working until the day before his final hospitalization - he was an architect and LOVED his work. And to keep traveling as much as we could. #BTSM |
| Dr. Sabine Schwab @Sabine_NJ T3: I believe in attacking my cancer from multiple angles. My health care team knows about nutrition, supplements etc. that I take or things I do to help me with my QoL. #btsm |
| Lisa O'Leary @lisaoleary524 @BethanyKwan I would not want to medical intervention if it would make me a "burden." My advanced directive ensures I won't be kept alive artificially. I couldn't do that to the QOL of my loved ones. #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @BTSMchat T3: At consultation, I always make time for the q: "how are your spirits?" after going over the logistics of planning/treatment/side-effects. I find that lot of what's important & maybe held-back comes out when provided comfortable silence beyond this. #btsm |
 | SarahScott Dietz @SDietzMD @BTSMchat T2: Having these conversations as a daughter and a physician with my father was challenging, and I found it frustrating when he reported his doctors hadn’t talked to him about QoL. He and my mom didn’t hear it being discussed early on, and I wish they had. #btsm |
| Ishwaria Subbiah, MD MS @IshwariaMD @hedy_wald absolutely. When we design trials, we look at what we know about the drug and choose 2 types of tools, (1) general/overall QoLs (2) tools specific to that cancer. 1/2 #btsm |
| (((Matthew Katz, MD))) @subatomicdoc @BethanyKwan @brainamerica Usually it's used as part of the intake process with nursing. Depending upon what the main symptoms/concerns are, it may focus on different areas. #btsm |
| Bethany Kwan @BethanyKwan @jeff_ccc @BTSMchat What would you have wanted to know then that you know now about the importance of Qol? #BTSM |
| The Brain Institute of America @brainamerica #btsm @subatomicdoc @brainamerica screening tools little. developing survey based approaches to obtain patient input. have to start small |
| Amanda Haddock 🧬 @AmandaHaddock RT @sotisgreen: Healthcare providers too often forget how overwhelming a new diagnosis is to hear - we need to remember that as anxiety goe… |
| SarahScott Dietz @SDietzMD @BTSMchat And yet I phrase it that way because I know that it’s entirely possible his clinicians were trying to discuss it and they just weren’t ready to hear it at that time. Sometimes that happens, and you have to re-approach a few times before it sinks in. #btsm |
| Ishwaria Subbiah, MD MS @IshwariaMD @hedy_wald 2/2 eg a cancer that causes shortness of breath, we would use a tool that measures QoL changes as a result of that symptom (shortness of breath) improving on this treatment. #btsm |
| (((Matthew Katz, MD))) @subatomicdoc @BethanyKwan @brainamerica I will try to see what information nursing obtain to use as cues in my conversation. Sometimes it has to be more basic at the first visit, but with my field there are often multiple visits to discuss/evaluate needs. #btsm |
| Charlie Blotner @CBlotner_ RT @BTSMchat: T3 // Patients & care partners: How do your personal values (spiritual, religious, scientific, etc.) factor into decisions a… |
| Liz Salmi @TheLizArmy @BTSMchat T3: What I consider "meaningful" in life has changed since diagnosis. Since I am nine years out, I have focused on "living" a fun life. And now I want to do more to give back. Having a positive impact is important to me. #btsm |
| Hedy Wald @hedy_wald Indeed crucial. Also need help w info on services. Hospice so so helpful w aides, wheelchair, hospital bed etc. Help from social work on medl team or thru hospice. Help w nutrition, sleep, pain management, PT for brace, arm sling and more -all impacts QoL #btsm https://t.co/BfLidGJF2b |
| BTSM chat | #btsm @BTSMchat RT @hedy_wald: Yr wrk is so important @IshwariaMD I honor u tonight #btsm We need to be thinking carefully also on what is true informed co… |
| Liz Salmi @TheLizArmy @jeff_ccc @BTSMchat @BCCancer Glad to have you pop in! #btsm |
| Amanda Haddock 🧬 @AmandaHaddock RT @TheRaeLynne: @BTSMchat T2 The discussions I recall related to treatment decisions: "If you choose X then Y might / could happen. . ." w… |
| BTSM chat | #btsm @BTSMchat RT @preopticarea: @BTSMchat T2 Nobody mentioned explicitly quality of life. #BTSM |
| Lisa O'Leary @lisaoleary524 @ZHeatherChamp My husband didn't qualify for anything because of his compromised state. Even though his tumor was "more common," he couldn't reap benefits of research. #BTSM |
| Terri Armstrong @Tsarmstrong01 You are right and not alone. Have to remember this is the first@time the pt hears it-not the 100th. Many folks say they don’t hear anything after the diagnosis, or until they hear scan results or anything after the news that the MRI is worse. #BTSM https://t.co/E0tlxVOAav |
| GoodGollyMsMolly @Lifeiskitsch @Sabine_NJ T3// for me, the journey is something I prefer to be very public about. That’s not religious or anything, but it makes my diagnosis seem less dreary. I have a purpose & my HF team seems to respect & support me. #btsm |
| BTSM chat | #btsm @BTSMchat RT @lisaoleary524: T3 We considered value of participating in research to future pt population vs potential compromise of function #btsm |
| BTSM chat | #btsm @BTSMchat RT @LungCancerSux: T2- our Neuro Onc asked hubby what he wanted to do most. We always visualize that goal! #btsm |
| Bethany Kwan @BethanyKwan @subatomicdoc @brainamerica Sounds like an "early (but not too early) and often approach" #BTSM |
| BTSM chat | #btsm @BTSMchat RT @ConnieEdelenMD: @BTSMchat What’s important for me to know about you as a person? #btsm #pallonc |
| Shirley Otis-Green @sotisgreen RT @ConnieEdelenMD: @BTSMchat What’s important for me to know about you as a person? #btsm #pallonc |
| BTSM chat | #btsm @BTSMchat RT @TheLizArmy: Wow! Interesting insight on what QOL means to a parent vs. a teen. #btsm #btsmqol https://t.co/nQnwQVlGPT |
| Liz Salmi @TheLizArmy @lisaoleary524 That is the number 1 thing I think about if I was ever presented with the opportunity to participate in a trial. #btsm |
| BTSM chat | #btsm @BTSMchat RT @BethanyKwan: @jeff_ccc @BTSMchat What would you have wanted to know then that you know now about the importance of Qol? #BTSM |
| Carolyn Pointer @CarolynAPointer @BTSMchat T3// the values I usually consider are about health equity and waste - so I declined to start mammogram screening at 40, for example. My current decisions are based on wanting to watch my kids grow up, but not have them see me suffer. #BTSM |
| Dr. Sabine Schwab @Sabine_NJ @TheLizArmy @lisaoleary524 Me too! #btsm |
| BTSM chat | #btsm @BTSMchat Topic T4 is coming up… #BTSM |
| Rae DeRose @TheRaeLynne @sean_sachdev @BTSMchat Such an important and good question; also gives patient and care partner a space to have that conversation, as it can be difficult to do so at such an overwhelming time. #BTSM |
| (((Matthew Katz, MD))) @subatomicdoc @KarenDeBonis Here's a meta-analysis - #openaccess https://t.co/6GGFcFDa0N #btsm |
| GoodGollyMsMolly @Lifeiskitsch RT @Tsarmstrong01: You are right and not alone. Have to remember this is the first@time the pt hears it-not the 100th. Many folks say they… |
| Shirley Otis-Green @sotisgreen RT @Lifeiskitsch: @BethanyKwan @BTSMchat Yes. I’d say so. I’m happier than I’ve ever been in my whole life— my diagnosis, my mom’s diagnosi… |
| Lisa O'Leary @lisaoleary524 @ZHeatherChamp Sadly, if you saw what he went through, you'd believe it. #BTSM |
| Charlie Blotner @CBlotner_ @BTSMchat T3: I value evidence based practice and experience, thus, I do a whole heck of a lot of research before I make a decision. I researched and chose my neurosurgeon at the age of 17 after consulting medical journals, patient message boards, textbooks, etc. 🤓 #btsm |
| Shirley Otis-Green @sotisgreen RT @BethanyKwan: @hedy_wald @subatomicdoc If we were going to measure QoL as an outcome in a clinical trial for patients with brain tumors,… |
| Hedy Wald @hedy_wald Yes @sotisgreen it's called Trauma #btsm https://t.co/85PWHNGVge |
| Jeff Cee @jeff_ccc @BethanyKwan @BTSMchat I had a lot of anxiety about the unknowns of being diagnosed with brain cancer. I understand it's the nature of the disease but it was tough to convey all the info & details to other family members/caregivers, as they were even more anxious about my diagnosis. #BTSM |
| Charlie Blotner @CBlotner_ @TheLizArmy Same. #btsm |
| (((Matthew Katz, MD))) @subatomicdoc @BethanyKwan @brainamerica It's very difficult as a doctor to know exactly how much to be able to share/tell in the best way on the very first visit. Honesty is essential but so is tact and empathy. Individualizing isn't easy #btsm |
| Shirley Otis-Green @sotisgreen RT @Tsarmstrong01: You are right and not alone. Have to remember this is the first@time the pt hears it-not the 100th. Many folks say they… |
| Lisa O'Leary @lisaoleary524 @CBlotner_ @BTSMchat So much benefit in having time to research. We didn't have that luxury unfortunately. Had to learn as we went, and I second guessed so many decisions after he died. #BTSM |
| Shirley Otis-Green @sotisgreen RT @CBlotner_: @BTSMchat T3: I value evidence based practice and experience, thus, I do a whole heck of a lot of research before I make a d… |
| GoodGollyMsMolly @Lifeiskitsch RT @subatomicdoc: @BethanyKwan @brainamerica It's very difficult as a doctor to know exactly how much to be able to share/tell in the best… |
| BTSM chat | #btsm @BTSMchat T4 // Patients & care partners: Given where you are now (e.g., in treatment, post-treatment), what does a “good healthcare outcome” look like to you? Clinicians: What does a "good healthcare outcome" look like for your patients who are NOT responding well to tx? #BTSM |
| The Brain Institute of America @brainamerica @BethanyKwan @subatomicdoc @brainamerica awesome paper. still require more data on the topic. hard to convince clinician for trial #BTSM |
| Claire Snyman @clairehsnyman #btsm T3: my personal values are more to the scientific side (from original training) = lists, research, data. Now ask lots of questions to help me manage my health care. So need a flexible health care team to work with me on this. |
| Claire Snyman @clairehsnyman RT @TheLizArmy: Wow! Interesting insight on what QOL means to a parent vs. a teen. #btsm #btsmqol https://t.co/nQnwQVlGPT |
| BTSM chat | #btsm @BTSMchat RT @CBlotner_: @BTSMchat T3: I value evidence based practice and experience, thus, I do a whole heck of a lot of research before I make a d… |
| Dr. Sabine Schwab @Sabine_NJ RT @BTSMchat: T4 // Patients & care partners: Given where you are now (e.g., in treatment, post-treatment), what does a “good healthcare o… |
| Liz Salmi @TheLizArmy @lisaoleary524 @ZHeatherChamp Lisa: You should share your blog with @ZHeatherChamp so she can get an idea. #btsm |
| (((Matthew Katz, MD))) @subatomicdoc @lisaoleary524 @CBlotner_ @BTSMchat Sorry you didn't have more time, in many ways. With very aggressive tumors, there is often only time and energy to react. The second guessing is normal. #btsm |
| Melanie Kabo @MelanieKabo @TheLizArmy I’m so close to the finish line now. Today has been a struggle with being nauseas. But we leave for vacation tomorrow, so that ups my QOL and boosts my spirits. #btsm |
| Shirley Otis-Green @sotisgreen A delicate balance @subatomicdoc #btsm @BTSMchat https://t.co/3I4fXTAehG |
| Liz Salmi @TheLizArmy This is an example of a "designer patient..." One who designs their own healthcare experience. #btsm #s4pm https://t.co/un6Os8Cc96 |
| (((Matthew Katz, MD))) @subatomicdoc RT @clairehsnyman: #btsm T3: my personal values are more to the scientific side (from original training) = lists, research, data. Now ask l… |
| 𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea @BTSMchat T3. It matters a lot, I am a neuroscientist and I have been using a lot of that training to research treatments and read papers. I am also Buddhist and that has helped a lot in terms of spirituality and coping mechanisms #BTSM |
| Lisa O'Leary @lisaoleary524 @TheLizArmy @ZHeatherChamp Great idea, Liz. Heather, if you're interested, my blog is https://t.co/qVWMIsqS1m. Just started a few months ago to assist grieving and finding my way without him. #BTSM |
| (((Matthew Katz, MD))) @subatomicdoc RT @BTSMchat: T4 // Patients & care partners: Given where you are now (e.g., in treatment, post-treatment), what does a “good healthcare o… |
 | Annette McKinnon @anetto RT @TheLizArmy: This is an example of a "designer patient..." One who designs their own healthcare experience. #btsm #s4pm https://t.co/un6… |
| Sheriff Tennant @brianatennant @BTSMchat T4 A good healthcare outcome? Staying Alive. I used to hate the word “stable”. Now? We are thrilled to hear it. #btsm |
| Ishwaria Subbiah, MD MS @IshwariaMD @BTSMchat honestly most times this can be a lot to cover in onc visits, esp if its the 1st time you've ever been asked about spirituality, values, etc. That's a big reason why our #PalliativeCare team works closely w the oncology team & pts FROM DIAGNOSIS! We cover multiple domains! #btsm https://t.co/ZbKOo3plOM |
| Dr. Sabine Schwab @Sabine_NJ RT @subatomicdoc: @BethanyKwan @brainamerica Just like pain scales, there are distress screening tools. There are different validated instr… |
| Hedy Wald @hedy_wald Our wonderful neurooncologist so full of empathy @DanaFarber always in few words let us know he was&is by our side &there would be options along the way2consider.This helped QoL bec it eased the terror somewhat. He could still smile w us&chat w my husband2give him dignity #btsm https://t.co/M2K0lqAhso |
| BTSM chat | #btsm @BTSMchat As we wind down... we want you to be aware of a BONUS CHAT later this month: All #BTSM-ers are welcome to weigh in as we discuss research possibilities with @hpmchat on Wednesday, April 25, from 6-7pm PT. #HPM #btsm #MedTwitter #btsmqol |
 | Park Ranger @netminnow RT @lisaoleary524: @CBlotner_ @BTSMchat So much benefit in having time to research. We didn't have that luxury unfortunately. Had to learn… |
| Melanie Kabo @MelanieKabo @Sabine_NJ Yes, and I’m stoked, but it’s still hard to see that finishline...I just know it’s there! #btsm |
| Park Ranger @netminnow RT @subatomicdoc: @lisaoleary524 @CBlotner_ @BTSMchat Sorry you didn't have more time, in many ways. With very aggressive tumors, there is… |
 | AP @radonconeuro RT @BTSMchat: This article is one of the inspirations behind tonight’s chat topic: “Where is the road map for #glioblastoma?” https://t.co… |
| Park Ranger @netminnow RT @CBlotner_: @BTSMchat T3: I value evidence based practice and experience, thus, I do a whole heck of a lot of research before I make a d… |
| Park Ranger @netminnow RT @BTSMchat: T3 // Patients & care partners: How do your personal values (spiritual, religious, scientific, etc.) factor into decisions a… |
| GoodGollyMsMolly @Lifeiskitsch @BTSMchat T4// Good healthcare outcome? A good relationship with my neuro team. Short of telling me all signs of tumor are gone, of course. Knowing that I can talk to them, ask questions, have their support— gives me a lot of comfort. Takes the fear away some. I’m not alone. #btsm |
| Shirley Otis-Green @sotisgreen RT @BTSMchat: As we wind down... we want you to be aware of a BONUS CHAT later this month: All #BTSM-ers are welcome to weigh in as we di… |
| Dr. Sabine Schwab @Sabine_NJ Agree with Brian @briantennant. I want to be alive, getting older, seeing my daughter graduate one day ;-) #btsm |
| Shirley Otis-Green @sotisgreen RT @TheLizArmy: This is an example of a "designer patient..." One who designs their own healthcare experience. #btsm #s4pm https://t.co/un6… |
| Charlie Blotner @CBlotner_ @subatomicdoc @lisaoleary524 @BTSMchat I hear that, Lisa. I'd say my experience of having initially years post-dx and then months after rediagnosis of sorts to research is quite atypical given the slow growing nature of my tumor, but generally aggressive nature of the disease. #btsm |
| 𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea @BTSMchat T4, a good healthcare outcome would mean being alive with as few as possible side effects and little disability. #BTSM |
| BTSM chat | #btsm @BTSMchat Mark your calendars for next #BTSM chat: Sunday, May 6, at 6pm PT/9pm ET. Topic? ... Well, you know what May is... |
| Bethany Kwan @BethanyKwan RT @BTSMchat: As we wind down... we want you to be aware of a BONUS CHAT later this month: All #BTSM-ers are welcome to weigh in as we di… |
| (((Matthew Katz, MD))) @subatomicdoc @IshwariaMD @BTSMchat Great outline of different key domains, @IshwariaMD ! #btsm |
| Dr. Sabine Schwab @Sabine_NJ RT @BTSMchat: Mark your calendars for next #BTSM chat: Sunday, May 6, at 6pm PT/9pm ET. Topic? ... Well, you know what May is... |
| Lung Cancer Sux @LungCancerSux YES! #btsm https://t.co/kfKmiFAAsN |
| Lisa O'Leary @lisaoleary524 @subatomicdoc @CBlotner_ @BTSMchat Thanks for that reminder. I felt completely at fault for not saving him. I believed it was my responsibility as his care partner and wife. I just wrote about it yesterday. #BTSM |
| Shirley Otis-Green @sotisgreen Thanks-will do @rover600 @BTSMchat #hpm #btsm https://t.co/DntV2A9glF |
| 𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea RT @CBlotner_: @BTSMchat T1: Initially, I thought about it as what do I want before I die. Now I realize that it's much more to do with the… |
| 𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea RT @subatomicdoc: @TheLizArmy @Lifeiskitsch @BTSMchat Definitely. A serious diagnosis, brain tumor or another potentially life-threatening… |
| BTSM chat | #btsm @BTSMchat RT @Sabine_NJ: Agree with Brian @briantennant. I want to be alive, getting older, seeing my daughter graduate one day ;-) #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T4: After my dx, a good outcome meant I would live longer. Today, a good outcome (should my cancer continue to grow) is that I am not a burden on my best friend and care partner--my husband, Brett. I just want him to not be stressed and anxious. #btsm |
| BTSM chat | #btsm @BTSMchat RT @preopticarea: @BTSMchat T4, a good healthcare outcome would mean being alive with as few as possible side effects and little disability… |
| Amanda Haddock 🧬 @AmandaHaddock @BTSMchat T4/ A return to health that is comparable or better than per-diagnosis. (I know that isn’t reality for most, but that’s what we’re aiming for!) #btsm |
 | 🌊zarabie♿ @zarabia1197 #btsm #QualityofLife There are so many factors, it's hard to point to 1 thing. Because of motor deficits and seizures, I already have to rely on my mother more than I'd like. But it's important to me to be as independent as possible. |
| Carolyn Pointer @CarolynAPointer @BTSMchat t4// In treatment, a good outcome would be regaining cognitive functioning, seeing the remaining tumor shrink, and having decades before it re-grows. Dream - a cure before it regrows. #btsm |
| AP @radonconeuro RT @hedy_wald: Maybe it's all abt how to be perceived as living with cancer and being able to do so vs dying from cancer #btsm https://t.co… |
| Dr. Sabine Schwab @Sabine_NJ RT @BTSMchat: As we wind down... we want you to be aware of a BONUS CHAT later this month: All #BTSM-ers are welcome to weigh in as we di… |
| Charlie Blotner @CBlotner_ RT @BTSMchat: T4 // Patients & care partners: Given where you are now (e.g., in treatment, post-treatment), what does a “good healthcare o… |
| The Brain Institute of America @brainamerica #btsm . great chat tonight. heart to all |
| 𝘾𝙝𝙧𝙞𝙨𝙩𝙞𝙣𝙚 𝙍𝙤𝙜𝙚𝙧𝙨, 𝙋𝙝𝘿 🌸🌱 🧬🧠 @preopticarea RT @Lifeiskitsch: @BethanyKwan @BTSMchat Yes. I’d say so. I’m happier than I’ve ever been in my whole life— my diagnosis, my mom’s diagnosi… |
| Charlie Blotner @CBlotner_ @BTSMchat Ok, this made me chuckle with a smirk emoji. #btsm |
| Lisa O'Leary @lisaoleary524 @CarolynAPointer @BTSMchat From your lips to God's/the Universe's/Source's/whoever's ears #BTSM |
| GoodGollyMsMolly @Lifeiskitsch RT @AmandaHaddock: @BTSMchat T4/ A return to health that is comparable or better than per-diagnosis. (I know that isn’t reality for most, b… |
| BTSM chat | #btsm @BTSMchat Please join us in thanking @BethanyKwan of @CUMedicalSchool for being tonight’s special guest. 👏👏👏 She has promised to report back to the #BTSM community on the direction this project is going. Learn more about her work w/@TheLizArmy at https://t.co/soZM6CAddt #BTSM |
| Hedy Wald @hedy_wald My husband is alive w GBM so quite a health outcome! But there R real life limitations&those of us in #glioblastoma community can feel like aliens in a world w ppl bustling by.Society even children in grade school need2lrn more abt disabilities2help all of us #btsm @drsitu https://t.co/omrRii8Hcf |
| Terri Armstrong @Tsarmstrong01 T4 -not having new or worsening symptoms, maintaining function , and level of interaction and involvement that the person wants.#BTSM https://t.co/J7jzPJ8oG3 |
| Ishwaria Subbiah, MD MS @IshwariaMD @subatomicdoc @BTSMchat Each pt meets this team in our #PalliativeCare clinic. Lots o ppl but each person serves a unique need that deserves its own attention! The talks we have gives the framework for the pt to have those QoL/Values talk w their onc teams! Makes life better for everyone involved! #btsm https://t.co/VwVCvXrMu5 |
| Shirley Otis-Green @sotisgreen OMG-so sorry you and your wife had this experience @rover600 ...it’s painful to read as it happens far to commonly... #hpm #btsm @BTSMchat https://t.co/DntV2A9glF |
| BTSM chat | #btsm @BTSMchat RT @brianatennant: @BTSMchat T4 A good healthcare outcome? Staying Alive. I used to hate the word “stable”. Now? We are thrilled to hear… |
| (((Matthew Katz, MD))) @subatomicdoc @lisaoleary524 @CBlotner_ @BTSMchat Not at all. Sometimes we can't save each other, but we can be there for each other. It sounds like you were there for him. #btsm |
| Rae DeRose @TheRaeLynne @BTSMchat T4 This is tough to think about - I'm not even sure if it would have mattered, but I sometimes wish I better understood how things could so quickly change / destabilize / decline. It was very surprising and in some ways I feel I could have been better prepared. #BTSM |
| Bethany Kwan @BethanyKwan Thanks for joining in the conversation tonight! For more about our quality of life research, please check out our website https://t.co/Gau0PZv1yx #btsm |
| Liz Salmi @TheLizArmy @IshwariaMD @BTSMchat You should join us for the #HPM chat on 4/25. Same topic and patient population, different focus of questions. #btsm |
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