#BTSM Transcript

Healthcare social media transcript of the #BTSM hashtag. (). See #BTSM Influencers.

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BTSM chat | #btsm @btsmchat
Welcome to #BTSM chat! Please remember to use hashtag (#BTSM) in order to take part in tonight’s conversation.
Team Intake.Me @intakeme
RT @TheLizArmy: Heads up Twitter friends: Expect increased tweet activity from me over next hour as I participate in the #BTSM twee…
BTSM chat | #btsm @btsmchat
#BTSM (brain tumor social media) is a patient-run, grassroots Twitter community & is not owned by any organization.
BTSM chat | #btsm @btsmchat
Tonight's #BTSM chat topic is: Caring for the Family Caregiver as well as the Patient: A Call for Action!
Hedy Wald @hedy_wald
@adamhayden: Thanks for joining us #btsm
Dr. Sabine Schwab @sabine_nj
RT @BTSMchat: #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community & is not owned by any organization.
Dr. Sabine Schwab @sabine_nj
RT @BTSMchat: Tonight's #BTSM chat topic is: Caring for the Family Caregiver as well as the Patient: A Call for Action!
BTSM chat | #btsm @btsmchat
The chat gets started in a few minutes -- please take a moment to introduce yourselves! #BTSM
Hedy Wald @hedy_wald
RT @BTSMchat: Tonight's #BTSM chat topic is: Caring for the Family Caregiver as well as the Patient: A Call for Action!
BTSM chat | #btsm @btsmchat
Let us know where you are joining us from, and whether you are a patient or caregiver. #BTSM
Dr. Sabine Schwab @sabine_nj
I'll be participating in said chat over the next 60 minutes. #btsm
Lisa O'Leary @lisaoleary524
Hi all, I'm Lisa from California. I was a caregiver for my husband Patrick who passed from GBM on 7/11/15. #btsm
Liz Salmi @thelizarmy
@Sabine_NJ Hey DOCTOR Sabine! Congrats, and welcome! #btsm
Liz Salmi @thelizarmy
@lisaoleary524 Yay, Lisa is in the house! First ever #btsm tweet chatter.
Brian Alexander @xelamb
Brian Alexander #radonc joining from Boston. #btsm
Dr. Sabine Schwab @sabine_nj
Hi, I'm Sabine, a 3.5 years survivor of AA3. I'm from Germany, live in NJ since 2010, and am a bt advocate and ABTA volunteer. #btsm
BTSM chat | #btsm @btsmchat
Healthcare providers: Please use this time to post any disclaimers or conflicts of interest. #BTSM
Charlie Blotner @cblotner_
@BTSMchat Hi all. Tomorrow will be 5 years since my awake cranio for a grade II Astrocytoma. I'm an MSW student now based in Seattle. #btsm
Hedy Wald @hedy_wald
My story’s key wrds:mom/grndmom/prof/clinl psychlgst/resilince coach/writr/cyclist/aerobcs lover/cancer caregivr;latter not by choice #btsm
Liz Salmi @thelizarmy
@BTSMchat Liz here. Grade 2 astrocytoma. Finished with treatment as of 2011. Blogger at https://t.co/RJpV8wi1lB. #btsm
Rick Franzo @braintumortalk
I am here, finally!! #btsm #benignisnotfine
Hedy Wald @hedy_wald
So good to know y'all You inspire, you fire me up #braincancer #btsm
Liz Salmi @thelizarmy
@xelamb Brian! Great to see you. We love #radonc community. ;) #btsm
Dr. Sabine Schwab @sabine_nj
@braintumortalk Hi Rick! Happy to see you here! #btsm
Hedy Wald @hedy_wald
@lisaoleary524 sorry 2hear this, my heart is with you #btsm
BTSM chat | #btsm @btsmchat
Before we begin, we want to take a moment to remember our #BTSM friend @MrRobJohn who died from glioblastoma a few weeks ago. https://t.co/1ZLgTOblq4
Charlie Blotner @cblotner_
@braintumortalk Rick! I've been hoping you'd join us for years! Glad we've finally converted you to join us on the dark side. #btsm
Charlie Blotner @cblotner_
RT @BTSMchat: Tonight's #BTSM chat topic is: Caring for the Family Caregiver as well as the Patient: A Call for Action!
Zach Weiner @zdubs
Proud of @hedy_wald for leading an important discussion and being the strongest and most caring person I know #BTSM https://t.co/B98Cem6QF8
Hedy Wald @hedy_wald
@CBlotner_ @braintumortalk Which dark side? Is that the eclipse? It doesn't last #btsm
Liz Salmi @thelizarmy
@braintumortalk Rick! You are finally here. Better late than never! #btsm
Charlie Blotner @cblotner_
@hedy_wald @braintumortalk Hah! This dark side has cookies. Probably baked by @stales. #btsm
Hedy Wald @hedy_wald
@zdubs @hedy_wald Wow I got all choked up already with that one ;-) #braincancer #lovewillfindaway #btsm
BTSM chat | #btsm @btsmchat
Please join us in welcoming tonight's special guest Hedy S. Wald, PhD! Follow Dr. Wald at @Hedy_Wald. #BTSM 👏👏👏
Rick Franzo @braintumortalk
I'm Rick, 3x non malignant by survivor 2 meningioma & an acoustic neuroma #btsm #benignisnotfine
Charlie Blotner @cblotner_
@lisaoleary524 Is this your first time with us, Lisa? Welcome! #btsm
BTSM chat | #btsm @btsmchat
.@hedy_wald is a Fam Med Prof at @BrownMedicine, Dir of @BostonChildrens child neuro residency resilience program, and... #BTSM
Hedy Wald @hedy_wald
@BTSMchat @hedy_wald So honored 2join U @share&2care&2learn together, a gift #btsm
BTSM chat | #btsm @btsmchat
.@hedy_wald is ALSO a caregiver for a spouse living w/brain cancer (#glioblastoma). #BTSM
Lisa O'Leary @lisaoleary524
@CBlotner_ @lisaoleary524 Yes, my first! I've thought about it for a while so I'm happy to join! #btsm
Rick Franzo @braintumortalk
@TheLizArmy happy to be here, been awhile! #btsm
Liz Salmi @thelizarmy
Thanks for joining us @hedy_wald! I appreciate you sharing your experience with all of us. #btsm
Liz Salmi @thelizarmy
@CBlotner_: I met @lisaoleary524 @NBTStweets' Heads to the Hill! #btsm
Hedy Wald @hedy_wald
It's been 5years caring4a husband w/GBM real&surreal, I think I still don't believe it #btsm
BTSM chat | #btsm @btsmchat
We will announce FOUR topics (T1 T2 etc). Pls label your answers with T1, T2, etc to make transcript easier to follow. #BTSM
Charlie Blotner @cblotner_
@lisaoleary524 We're so glad that you took a leap and decided to partake this evening. @TheLizArmy can be very convincing! #btsm
h e a t h e r | #PTEN @zheatherchamp
I'm Heather; living w 2 Gangliocytoma since 2011. I love to research genealogy and I blog about Rare Disease life. #btsm #pten #rdsm
Hedy Wald @hedy_wald
@TheLizArmy @hedy_wald I would write "my pleasure" but this is tough stuff we know but so honored by all of U #btsm
BTSM chat | #btsm @btsmchat
T1: What coping strategies have you developed in your role as a brain tumor caregiver? If you are a patient, what helps you cope? #BTSM
Lisa Joerling @lisajaayyy
@BTSMchat can't join tonight! Will chat next month with you all. Best wishes to everyone #btsm
Rick Franzo @braintumortalk
@TheLizArmy I'll post a link on here at the end of the chat #btsm
Adam Hayden @adamhayden
Hey, all! Less activity from me first several minutes as I handle rocking duties for kiddo bedtime. Catch up soon! Cheers, A. ❤️ #btsm
Liz Salmi @thelizarmy
@ZHeatherChamp Great to see you Heather. Let me know how #RDSM is coming along! #btsm
Charlie Blotner @cblotner_
RT @BTSMchat: Please join us in welcoming tonight's special guest Hedy S. Wald, PhD! Follow Dr. Wald at @Hedy_Wald. #BTSM 👏👏👏
Hedy Wald @hedy_wald
T1Coping4me thru #writing: https://t.co/wiif4A7zlH & https://t.co/EiET6p1r3e #btsm
Brian Alexander @xelamb
@TheLizArmy Thanks Liz! And thanks for telling me about me the #btsm community in DC!
Rick Franzo @braintumortalk
@Sabine_NJ #btsm
Liz Salmi @thelizarmy
RT @BTSMchat: T1: What coping strategies have you developed in your role as a brain tumor caregiver? If you are a patient, what helps you c…
Charlie Blotner @cblotner_
RT @BTSMchat: .@hedy_wald is a Fam Med Prof at @BrownMedicine, Dir of @BostonChildrens child neuro residency resilience program, and... #BT
Charlie Blotner @cblotner_
RT @BTSMchat: .@hedy_wald is ALSO a caregiver for a spouse living w/brain cancer (#glioblastoma). #BTSM
Hedy Wald @hedy_wald
T1 Humanities eg: #art #writing 2help:”We write into our wounds” Adrienne Rich #btsm
Rick Boulay,MD @journeycancer
RT @TheLizArmy: Heads up Twitter friends: Expect increased tweet activity from me over next hour as I participate in the #BTSM twee…
Lisa O'Leary @lisaoleary524
T1 Truthfully I didn't have a lot of time to develop coping skills at the time. It was very chaotic- 10 months from 1st seizure to dx #btsm
Lisa O'Leary @lisaoleary524
Seizure to passing, sorry #btsm
Hedy Wald @hedy_wald
@lisaoleary524 Yes we need2remember different skills4different points in time, traumatic in beginning #btsm
Charlie Blotner @cblotner_
@LisaJaayyy Appreciate you popping on to let us know - see you next month! #btsm
Hedy Wald @hedy_wald
T1We bring our stories2inform our work: https://t.co/WxdMsjRtoQ #btsm
Dr. Sabine Schwab @sabine_nj
T1: Coping through helping others, writing, living life every day! #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T1Coping4me thru #writing: https://t.co/wiif4A7zlH & https://t.co/EiET6p1r3e #btsm
Liz Salmi @thelizarmy
@BTSMchat T1: My husband did/does an amazing job as a caregiver. His existence helps me be a stronger patient. If that makes any sense #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T1 Humanities eg: #art #writing 2help:”We write into our wounds” Adrienne Rich #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: T1 Truthfully I didn't have a lot of time to develop coping skills at the time. It was very chaotic- 10 months from 1st…
Rick Franzo @braintumortalk
@BTSMchat @hedy_wald Hi Hedy! Nice to meet you here!! #btsm
h e a t h e r | #PTEN @zheatherchamp
@LisaJaayyy Have a good one! <3 #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T1We bring our stories2inform our work: https://t.co/WxdMsjRtoQ #btsm
BTSM chat | #btsm @btsmchat
RT @Sabine_NJ: T1: Coping through helping others, writing, living life every day! #btsm
Lisa O'Leary @lisaoleary524
T1: The one change I would make would have been taking time for myself and allowing people to help more. 1/ #btsm
Hedy Wald @hedy_wald
T1As caregiver, how cope w/feeling as if ur living in a parallel universe? How cope w/isolation feeling? #btsm
BTSM chat | #btsm @btsmchat
RT @TheLizArmy: @BTSMchat T1: My husband did/does an amazing job as a caregiver. His existence helps me be a stronger patient. If that make…
h e a t h e r | #PTEN @zheatherchamp
Excuse me: Who's posting the topics again? #btsm
Lisa O'Leary @lisaoleary524
T1: I tried to control everything to change the outcome. Since he died I was dx with PTSD and it's been a rough road to recover. #btsm
Dr. Sabine Schwab @sabine_nj
@TheLizArmy Same is true for me/ my husband. I always tell him he is my rock! #btsm
Hedy Wald @hedy_wald
@lisaoleary524 I do hear this, ppl do want2help, no shame in saying YES #btsm
Charlie Blotner @cblotner_
RT @BTSMchat: T1: What coping strategies have you developed in your role as a brain tumor caregiver? If you are a patient, what helps you c…
Hold Your Head Up 💎 @hyhutriangle
@BTSMchat T1: As a patient and having been a caregiver, patience is key. You don't have to be perfect. #BTSM
Jeff Cee @jeff_ccc
@BTSMchat Patient here w/ Gr 4 glioblastoma. 2017 May 1 surgery. Just finished Cycle 1 of Temodar 250mg. Vancouver, Canada. #BTSM
Liz Salmi @thelizarmy
@BTSMchat T1: Oddly, I was a caregiver for about 1 week after husband had MINOR stroke. I guess I did I good job, had good role model #btsm
Liz Salmi @thelizarmy
RT @Sabine_NJ: @TheLizArmy Same is true for me/ my husband. I always tell him he is my rock! #btsm
Hedy Wald @hedy_wald
@HYHUTriangle @BTSMchat That's really profound, TY #btsm
Liz Salmi @thelizarmy
@Sabine_NJ What would we do without our amazing rocks? Rocks rock! #btsm
Rick Franzo @braintumortalk
@BTSMchat as a patient, advocating for others helps me as well #btsm
h e a t h e r | #PTEN @zheatherchamp
A1: I think I lament too much I am doing "this" alone. It's just me, myself and I. I write a lot. #btsm
Liz Salmi @thelizarmy
RT @hedy_wald: @lisaoleary524 I do hear this, ppl do want2help, no shame in saying YES #btsm
Hold Your Head Up 💎 @hyhutriangle
RT @hedy_wald: @HYHUTriangle @BTSMchat That's really profound, TY #btsm
Hedy Wald @hedy_wald
T1Try2not let inner pain rule the day, push 4ward w/creative projects, future plans, don’t read abt #cancer 24/7 #btsm
Jeff Cee @jeff_ccc
@BTSMchat T1: i cope by running! Ran 2 half marathons since surgery. #BeatYesterday #BTSM
Liz Salmi @thelizarmy
Listen up #caregivers! MT @hedy_wald No shame in saying YES to help #btsm
Hedy Wald @hedy_wald
T1Cope by being even kinder in the world. I love filling out praise forms at hotels &4airlines #btsm
Jeff Cee @jeff_ccc
RT @BTSMchat: T1: What coping strategies have you developed in your role as a brain tumor caregiver? If you are a patient, what helps you c…
Lisa O'Leary @lisaoleary524
@hedy_wald Absolutely - reading the statistics is NOT helpful. Being informed was, but dwelling on the numbers is terrifying #btsm
Dr. Sabine Schwab @sabine_nj
@TheLizArmy They do indeed! (ask Rick about Michael, it's always fun when he joins our support group meetings) ;-) @braintumortalk #btsm
Charlie Blotner @cblotner_
T1. Caregiver logistical support has been a big relief in terms of stress reduction and things to worry about while recovering. #btsm
Hold Your Head Up 💎 @hyhutriangle
RT @HYHUTriangle: @BTSMchat T1: As a patient and having been a caregiver, patience is key. You don't have to be perfect. #BTSM
BTSM chat | #btsm @btsmchat
RT @HYHUTriangle: @BTSMchat T1: As a patient and having been a caregiver, patience is key. You don't have to be perfect. #BTSM
h e a t h e r | #PTEN @zheatherchamp
@jeff_ccc That's amazing. I have a (kinda) bucket list thing to run a -half at Disneyland one day. :) #btsm
Hedy Wald @hedy_wald
@lisaoleary524 @hedy_wald SO TRUE that word TERROR says it all. I thought a funeral <1yr, he's alive 5 #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: @lisaoleary524 I do hear this, ppl do want2help, no shame in saying YES #btsm
BTSM chat | #btsm @btsmchat
Reminder: If you are here just to listen, please tweet “#btsm” so we know you’re in the audience. #btsm
Rick Franzo @braintumortalk
@BTSMchat T1 my wife and kids and mom are my rock. I'm pretty lost without them #btsm
h e a t h e r | #PTEN @zheatherchamp
@hedy_wald That's a good point, too. I also try to make the extra effort to be kind to ppl in service industry. #btsm
Erica @eleighrobs
@BTSMchat #btsm Here, and listening.
Melanie Kabo @melaniekabo
Sorry I'm late, thanks for the reminder @Cblotner_ #btsm
Liz Salmi @thelizarmy
@hedy_wald @lisaoleary524 I can't wait 'till @adamhayden jumps back into the convo in a few minutes. He's living with GBM. #btsm
Hold Your Head Up 💎 @hyhutriangle
RT @BTSMchat: Reminder: If you are here just to listen, please tweet “#btsm” so we know you’re in the audience. #btsm
Hedy Wald @hedy_wald
@ZHeatherChamp @hedy_wald That's beautiful they love it & appreciate it #btsm
Lisa O'Leary @lisaoleary524
My husband had a very, very hard time - lots of behavioral problems, violence, sx like dementia - I was afraid to tell anyone #btsm
Dale Logan @seedmatrix
#btsm
Hedy Wald @hedy_wald
T1Cope w/ indulging in the arts whenever possible, finding live #music & art museum when I travel2present #btsm
Charlie Blotner @cblotner_
@hedy_wald Yes! The importance of taking a healthy step back when things can become all consuming. #btsm
Scott Holloway @heypunko
#btsm
h e a t h e r | #PTEN @zheatherchamp
@HeatherVcu Hey friend. Are you up this late? #btsm tweetchat going on now.
Liz Salmi @thelizarmy
@ZHeatherChamp Yes! Express kindness with everyone who cares for us. #btsm
Lisa O'Leary @lisaoleary524
I was fearful that Patrick would be taken away from me if I told the truth about what was happening so I was isolated and felt alone #btsm
Liz Salmi @thelizarmy
@heypunko Oh, Scott's lurking! Thanks for letting us know you are here. :D #btsm
h e a t h e r | #PTEN @zheatherchamp
@keelycreative Hey there. How are you? There's a #btsm tweetchat going on. Are you around? #gangliocytoma #btsm
BTSM chat | #btsm @btsmchat
Topic T2 is coming up… #BTSM
Hedy Wald @hedy_wald
@TheLizArmy @ZHeatherChamp &even when folks not stepping up2the plate cuz they can't4some reason, this stuff is scary #btsm
Hedy Wald @hedy_wald
T1 War, battle metaphors don’t wrk4me w/incurable #cancer #btsm
Melanie Kabo @melaniekabo
T1- My kids keep me on my toes, which helps me cope. But mostly having such a wonderful husband is what gets me through. #btsm
h e a t h e r | #PTEN @zheatherchamp
@hedy_wald It still irks me to this day, when people told me, "Oh Heather. You're so strong." WHUT?! #btsm
Lisa O'Leary @lisaoleary524
Helpful to let go of judgment of how others step up - or don't - because that just bred anger and resentment and left me less present #btsm
BrainCncrSlayer @braincncrslayer
RT @BTSMchat: Reminder: If you are here just to listen, please tweet “#btsm” so we know you’re in the audience. #btsm
Rick Franzo @braintumortalk
@Sabine_NJ @TheLizArmy True. Michael is great! He's a solid guy, much respect to him, and he's a lot of fun!! #btsm
LizM @elm925
Wife of 2 year and counting GBM survivor listening #btsm
Liz Salmi @thelizarmy
@hedy_wald How do you and your husband balance/make travel work with him living with #glioblastoma? #btsm
Charlie Blotner @cblotner_
@lisaoleary524 I think this fear is very common in dementia and elder care as well, unfortunately. Appreciate your honesty in sharing. #btsm
h e a t h e r | #PTEN @zheatherchamp
@lisaoleary524 Very well said. I am (still) struggling w resentment towards my friends & how they acted during my recovery. #btsm
BTSM chat | #btsm @btsmchat
T2: What resources/help from healthcare professionals would u recommend to BT caregivers? What more is needed for caregivers? #BTSM
Dr. Sabine Schwab @sabine_nj
@MelanieKabo @thelizarmy another rock star husband. We should connect them ;-) #btsm
Lisa Fields @lisafieldsms
RT @TheLizArmy: @BTSMchat T1: My husband did/does an amazing job as a caregiver. His existence helps me be a stronger patient. If that make…
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: Helpful to let go of judgment of how others step up - or don't - because that just bred anger and resentment and left me…
Melanie Kabo @melaniekabo
RT @Sabine_NJ: @MelanieKabo @thelizarmy another rock star husband. We should connect them ;-) #btsm
Lisa Fields @lisafieldsms
RT @lisaoleary524: T1: The one change I would make would have been taking time for myself and allowing people to help more. 1/ #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: I was fearful that Patrick would be taken away from me if I told the truth about what was happening so I was isolated an…
Liz Salmi @thelizarmy
@elm925 Thanks for lurking! Jump in anytime. Your perspective/questions/tips are valued here. #btsm
h e a t h e r | #PTEN @zheatherchamp
A2: Caregivers need to know they don't have to do it alone. My mom didn't reach out, didn't ask for help. #btsm
Dr Vicky Forster @vickyyyf
@BTSMchat Joining you here from the Toronto airport Canadian border queue! In the #btsm audience :)
Melanie Kabo @melaniekabo
@Sabine_NJ @MelanieKabo @TheLizArmy It would be great for them to know they're not alone. #btsm
Hold Your Head Up 💎 @hyhutriangle
T1: I not the same person you were before brain surgery. Thankful for the support of family, who understand the struggles. #BTSM
Dr. Sabine Schwab @sabine_nj
RT @BTSMchat: T2: What resources/help from healthcare professionals would u recommend to BT caregivers? What more is needed for caregivers?…
Hedy Wald @hedy_wald
@ZHeatherChamp a powerful statement thanks #btsm
h e a t h e r | #PTEN @zheatherchamp
A2a: And conversely, I think she really resented me during the process. Not on purpose, of course. Just human. #btsm
Lisa O'Leary @lisaoleary524
A2: individual counseling was paramount for me - didn't start til 2 weeks before Patrick passed, but continued for 2 years #btsm
Hedy Wald @hedy_wald
T1 #braincancer impacts sons/daughters Heartheirstory https://t.co/rREXYDzaf1 #btsm
DavisLiuMD @davisliumd
RT @TheLizArmy: @BTSMchat T1: My husband did/does an amazing job as a caregiver. His existence helps me be a stronger patient. If that make…
Hold Your Head Up 💎 @hyhutriangle
T1: I'm not the same person you were before brain surgery. Thankful for the support of family, who understand the struggles. #BTSM
Hedy Wald @hedy_wald
@lisaoleary524 We need2do what we have to do #courage #btsm
Liz Salmi @thelizarmy
@vickyyyf Welcome home! We need a full debrief on your @TEDTalks! #btsm
Charlie Blotner @cblotner_
Providing care along and in silence out of fear vs asking for potential help. A nearly impossible predicament. #btsm https://t.co/qEoiKUu5c5
Hedy Wald @hedy_wald
T1When U come out of storm U won't be same person that walked in - Murakami. family #cancer #caregiver 2 Lasting effects #meded #btsm
Lisa Fields @lisafieldsms
RT @hedy_wald: T1Cope by being even kinder in the world. I love filling out praise forms at hotels &4airlines #btsm
h e a t h e r | #PTEN @zheatherchamp
Hello! Heather here, jumping back & forth from #btsm chat too. Will jump in! Living w 2 brain tumors and Rare Disease. #pten #hcsm
Lisa O'Leary @lisaoleary524
@ZHeatherChamp I had resentment and felt SO much guilt about it. I resented the disease but it sure looked&sounded like him. #btsm
Dr. Sabine Schwab @sabine_nj
T2: Time off! ;-) #btsm
Hedy Wald @hedy_wald
T2 David Oliver @BMJ Don’t take carers for granted https://t.co/tEVgfS7cKv #btsm
Melanie Kabo @melaniekabo
T2- Finding a support group for both the caregiver and patient. Luckily in San Diego We have a great one that both of us attend. #btsm
Hold Your Head Up 💎 @hyhutriangle
T1: I'm not the same person was before brain surgery. Thankful for the support of family & people who understand the struggles. #BTSM
Liz Salmi @thelizarmy
@BTSMchat Cool resource: @UCSFCancer has implemented a special program for caregivers of people with brain tumors. #btsm
Hedy Wald @hedy_wald
T2 See family #cancer caregivers as co-producers as knowledge alongside patients #btsm
Charlie Blotner @cblotner_
@vickyyyf Such dedication! #btsm
BTSM chat | #btsm @btsmchat
RT @TheLizArmy: @BTSMchat Cool resource: @UCSFCancer has implemented a special program for caregivers of people with brain tumors. #btsm
Dr Vicky Forster @vickyyyf
@TheLizArmy @TEDTalks Oh my! Well it went quite well. Hoping will be selected for online so you can all see it! #btsm https://t.co/2BPizsDX2m
Liz Salmi @thelizarmy
@MelanieKabo @Sabine_NJ I wish my husband/caregiver was more open to connecting with other caregivers. #btsm
Dr. Sabine Schwab @sabine_nj
@MelanieKabo We have one that we both attend as well - if hubby's work schedule allows. #btsm
Hedy Wald @hedy_wald
@TheLizArmy @BTSMchat @UCSFCancer Tx on that I need to check this out #btsm
Lisa O'Leary @lisaoleary524
@TheLizArmy @BTSMchat @UCSFCancer That's WONDERFUL! I spent so much time at UCSF, Patrick was inpatient 5 mos. Wish they had that then #btsm
Charlie Blotner @cblotner_
@TheLizArmy Can you tell us more about the @UCSFCancer caregivers program? #btsm
Charlie Blotner @cblotner_
RT @BTSMchat: T2: What resources/help from healthcare professionals would u recommend to BT caregivers? What more is needed for caregivers?…
Hold Your Head Up 💎 @hyhutriangle
Struggle like writing this tweet. Left brain #BTSM @BTSMchat
Liz Salmi @thelizarmy
RT @hedy_wald: T1When U come out of storm U won't be same person that walked in - Murakami. family #cancer #caregiver 2 Lasting effects #m
Hedy Wald @hedy_wald
@lisaoleary524 @ZHeatherChamp Me2 not enough written abt this, the anger/resentment, watching life pass us by, it hurts #btsm
ShereeseM, MS/MBA @shereesepubhlth
@TheLizArmy @MelanieKabo @Sabine_NJ I just finished research on this. "Support" is a peculiar thing; some feel more isolated in groups.They'd rather keep the COC intimate #btsm
Hedy Wald @hedy_wald
T2Unique features of #cancer caregiving exp vs4other chronic conds. https://t.co/bvLwwERcbU Do Not Homogenize #btsm
Liz Salmi @thelizarmy
Powerful. MT @lisaoleary524 I resented the disease but it sure looked&sounded like him. #btsm
Lisa O'Leary @lisaoleary524
I connected with other caregivers/spouses through ABTA online forums - met some other wives with husbands struggling - helpful #btsm
Rick Franzo @braintumortalk
@BTSMchat ABTA &NBTS are great organizations for solid information and guidance. #btsm #benignisnotfine
Hedy Wald @hedy_wald
@TheLizArmy @MelanieKabo @Sabine_NJ not everyone is into a "support grp" doesn't work 4me #btsm
Charlie Blotner @cblotner_
T2: I would recommend a support group for caregivers to connect with others who "get it," but as we know (and why #btsm first started!) /1
Lisa Fields @lisafieldsms
RT @hedy_wald: T1 War, battle metaphors don’t wrk4me w/incurable #cancer #btsm
Liz Salmi @thelizarmy
@lisaoleary524 Yes, it is a new program. I went to @UCSFCancer for first time in May and a social worker spent time w/my husband. #btsm
Melanie Kabo @melaniekabo
RT @CBlotner_: T2: I would recommend a support group for caregivers to connect with others who "get it," but as we know (and why #btsm firs…
Lisa Fields @lisafieldsms
RT @BTSMchat: T2: What resources/help from healthcare professionals would u recommend to BT caregivers? What more is needed for caregivers?…
Lisa O'Leary @lisaoleary524
I think groups specific to brain cancer/tumors helpful - general cancer groups not bc brain cancer SO different #btsm
Charlie Blotner @cblotner_
those can be few and far between. Not everyone feels comfortable using Twitter as a resource or using social media to share, either./2 #btsm
Lisa Fields @lisafieldsms
RT @lisaoleary524: T1 Truthfully I didn't have a lot of time to develop coping skills at the time. It was very chaotic- 10 months from 1st…
Liz Salmi @thelizarmy
@HYHUTriangle No problem! We understand. Take all the time you need with writing. :) #btsm
Hedy Wald @hedy_wald
T2Need integrative #medicine available 4caregivrs, finl counseling job retrain? Hear abt integrativ med4cancer pts what abt caregivr #btsm
Dr. Sabine Schwab @sabine_nj
@hedy_wald Have you tried online support groups? I did not like the first in person group either that I attended. #btsm
Liz Salmi @thelizarmy
RT @hedy_wald: @lisaoleary524 @ZHeatherChamp Me2 not enough written abt this, the anger/resentment, watching life pass us by, it hurts #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: I think groups specific to brain cancer/tumors helpful - general cancer groups not bc brain cancer SO different #btsm
Liz Salmi @thelizarmy
RT @lisaoleary524: I connected with other caregivers/spouses through ABTA online forums - met some other wives with husbands struggling - h…
BTSM chat | #btsm @btsmchat
RT @braintumortalk: @BTSMchat ABTA &NBTS are great organizations for solid information and guidance. #btsm #benignisnotfine
Hedy Wald @hedy_wald
@Sabine_NJ @hedy_wald interesting...in beginning trauma, didn't want2hear word cancer, in a diff place now #btsm
Lisa O'Leary @lisaoleary524
Even groups for brain tumors can be hard - I compared my situation a lot and became bitter at times that Patrick's sx were "worse" #btsm
Liz Salmi @thelizarmy
Twitter is my support group. RT @hedy_wald not everyone is into a "support grp" doesn't work 4me #btsm
ShereeseM, MS/MBA @shereesepubhlth
@hedy_wald @TheLizArmy @MelanieKabo @Sabine_NJ Also, the need/desire for group support may be affected by SDOH and BDOH. You're right; not for everybody #btsm
BTSM chat | #btsm @btsmchat
Topic T3 is coming up… #BTSM
Melanie Kabo @melaniekabo
@lisaoleary524 We have the San Diego Brain Tumor Foundation here, which is wonderful in having 2 support groups each month. #btsm
Hedy Wald @hedy_wald
T2need2care for selvesKentetal’16 #Cancer journal: cancer caregivrs cancer-specific stress-impact on own physl health&immune func #btsm
Hold Your Head Up 💎 @hyhutriangle
Hard to ASK, for a person who is wired not to ask for anything. #btsm https://t.co/7290XKKcBf
Lisa O'Leary @lisaoleary524
@MelanieKabo @lisaoleary524 That's awesome. I went to law school in SD. Great resources - and visiting ocean most therapeutic of all! #btsm
Liz Salmi @thelizarmy
@lisaoleary524 I feel weird attending in-person support group because I'm doing so well. Afraid ppl will say "Why are you even here?" #btsm
BTSM chat | #btsm @btsmchat
T3: What is the role of caregivers in clinical trial enrollment & success & how may the medical team promote their engagement? #BTSM
Adam Hayden @adamhayden
Back. So rude of me & many thx for understanding. We're a family of 5 w 3 kids 6yo and under. My caregiver/wife away for needed R&R. #btsm
Lisa O'Leary @lisaoleary524
@TheLizArmy @lisaoleary524 Totally makes sense. I think this is a wonderful forum. I already feel less alone and more understood #btsm
h e a t h e r | #PTEN @zheatherchamp
@lisaoleary524 @BTSMchat That would be amazing; yet those w rare tumors wouldn't benefit. I do see your point tho. #btsm
Charlie Blotner @cblotner_
Sit with this sentence for a moment. MT @lisaoleary524 I resented the disease but it sure looked & sounded like him. #btsm
Liz Salmi @thelizarmy
RT @CBlotner_: Sit with this sentence for a moment. MT @lisaoleary524 I resented the disease but it sure looked & sounded like him. #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T2Unique features of #cancer caregiving exp vs4other chronic conds. https://t.co/bvLwwERcbU Do Not Homogenize #btsm
BTSM chat | #btsm @btsmchat
RT @TheLizArmy: Powerful. MT @lisaoleary524 I resented the disease but it sure looked&sounded like him. #btsm
Hedy Wald @hedy_wald
T2Need support:Fam #cancer caregivg requires tasks that mayB physicaly,emotionaly,socialy,financiay demandng https://t.co/6VbBRYibvu #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: I connected with other caregivers/spouses through ABTA online forums - met some other wives with husbands struggling - h…
BTSM chat | #btsm @btsmchat
RT @MelanieKabo: @lisaoleary524 We have the San Diego Brain Tumor Foundation here, which is wonderful in having 2 support groups each month…
Myeloma Teacher @myelomateacher
RT @BTSMchat: T3: What is the role of caregivers in clinical trial enrollment & success & how may the medical team promote their engagement…
Lisa O'Leary @lisaoleary524
T3: My husband could not use computer/write/etc from start so I was the one researching. It was very daunting. #btsm
Liz Salmi @thelizarmy
Everyone dealing w/brain cancer could learn a lot from @lisaoleary524's experience as a caregiver. Not all ☀️ & 🌈. #btsm
Melanie Kabo @melaniekabo
RT @hedy_wald: T2Need support:Fam #cancer caregivg requires tasks that mayB physicaly,emotionaly,socialy,financiay demandng https://t.co/6V…
Hedy Wald @hedy_wald
@lisaoleary524 Thank U for U, daunting indeed, can feel vaporized as a caregiver it's not abt me but it IS abt me too #btsm
Rick Franzo @braintumortalk
T2.caregiver support material seems 2 be 4 cancer patients benign tumors can and do have as much impact on families #btsm #benignisnotfine
h e a t h e r | #PTEN @zheatherchamp
@coratagge Hello! I can't recall do you have LDD too? Did you hear about @BTSMchat and their tweet chats? Are you around? #btsm
ShereeseM, MS/MBA @shereesepubhlth
T3 Role of care giver in #ClinTrials is evolving. Consider; the caregiver is closest & most constant observer, making their role vital #btsm
Lisa O'Leary @lisaoleary524
A3: Our care team did not really promote trials. I asked but it wasn't encouraged, partly cuz of his many complications. #btsm
Patti & Ron Gauvin @pattigauvin
#btsm I have been listening. Carer for 26 yr survivor
Rick Franzo @braintumortalk
@dawnsonea @BTSMchat excellent!! #btsm #benignisnotfine
Chloe Drew @chloedrew8
@BTSMchat @BrainCncrSlayer #btsm I'm here and listening also from Perth, Australia (I'm a caregiver)
Lisa O'Leary @lisaoleary524
The new Clinical Trial Finder that #NBTS launched is a fantastic resource. #btsm
Hedy Wald @hedy_wald
@ShereesePubHlth Indeed, why 3% enrolled? mayB more attn. needed2 caregiver, health literacy etc WE ARE HERE #btsm
Liz Salmi @thelizarmy
@adamhayden We missed you. Lots of GBM talk. Many caregivers here. #btsm
Adam Hayden @adamhayden
T3 Patient reported outcomes (PRO) increasing in popularity in clinical trials, caregiver can help track QOL & new symptoms? #btsm
Hedy Wald @hedy_wald
T3J.Schnall, CEO:Natl Family Caregivers Assoc: “ #caregiver is critical2success of a pt’s participation in clinical trial” #btsm
h e a t h e r | #PTEN @zheatherchamp
@braintumortalk What is that hashtag? #btsm
Lisa Fields @lisafieldsms
RT @lisaoleary524: T3: My husband could not use computer/write/etc from start so I was the one researching. It was very daunting. #btsm
Liz Salmi @thelizarmy
RT @ShereesePubHlth: T3 Role of care giver in #ClinTrials is evolving. Consider; the caregiver is closest & most constant observer, making…
Lisa O'Leary @lisaoleary524
@ShereesePubHlth I so relate to this. No one knew Patrick's case better than I did. I was the one with him, watching 24/7. #btsm
Charlie Blotner @cblotner_
How often do we stop and think about a caregiver's experience as "vaporized?" I hadn't until now. Thank you. #btsm https://t.co/K3dLxw2gfg
Adam Hayden @adamhayden
@TheLizArmy I'll comb the transcript post-chat. Bummed to miss. #btsm
Hedy Wald @hedy_wald
T3 #cancer #ClinicalTrials – use pt-ctred & caregiver-ctred language4health literacy #btsm
Dr. Sabine Schwab @sabine_nj
T3: Dr. Shou stressed importance of caregiver involvement at the recent ABTA conference! He said it's a secret of long term survival. #btsm
Liz Salmi @thelizarmy
@pattigauvin Great to see you here Patti. Give Ron a hug for me. #btsm
h e a t h e r | #PTEN @zheatherchamp
@CBlotner_ Vaporized? In what way? #btsm
Charlie Blotner @cblotner_
RT @BTSMchat: T3: What is the role of caregivers in clinical trial enrollment & success & how may the medical team promote their engagement…
Hedy Wald @hedy_wald
T3 #Patientengagement #patientexperience #patientempowerment, #SDM Can we use word caregiver2? #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T2Need support:Fam #cancer caregivg requires tasks that mayB physicaly,emotionaly,socialy,financiay demandng https://t.co/6V…
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: T3: My husband could not use computer/write/etc from start so I was the one researching. It was very daunting. #btsm
BTSM chat | #btsm @btsmchat
If you are here tonight to just listen, please tweet “#BTSM” so we know you’re in the audience #btsm
Hedy Wald @hedy_wald
@ZHeatherChamp @CBlotner_ You can feel invisible. #btsm
BTSM chat | #btsm @btsmchat
RT @braintumortalk: T2.caregiver support material seems 2 be 4 cancer patients benign tumors can and do have as much impact on families #bt
Lisa Fields @lisafieldsms
RT @TheLizArmy: Everyone dealing w/brain cancer could learn a lot from @lisaoleary524's experience as a caregiver. Not all ☀️ & 🌈. #btsm
Adam Hayden @adamhayden
RT @ShereesePubHlth: T3 Role of care giver in #ClinTrials is evolving. Consider; the caregiver is closest & most constant observer, making…
Hedy Wald @hedy_wald
@Sabine_NJ Id like to hear more about him and this, can u provide info #btsm
Hold Your Head Up 💎 @hyhutriangle
T3: Duke Cancer Center, has so many available programs to assist caregivers with a support team. #BTSM https://t.co/qRSTwd8Dka
Lisa O'Leary @lisaoleary524
We talked about using the word "care partner" instead of "caregiver" at one point. I like that so much better. #btsm
Hedy Wald @hedy_wald
T3 Clinical trials4 #braintumors @NCI https://t.co/YAPPLMixvQ #btsm
Lisa O'Leary @lisaoleary524
Otherwise you can feel like a parent-child instead of loving spouse - hard on both partners. #btsm
Liz Salmi @thelizarmy
@BTSMchat T3: I've been a patient for 9 years. So much has changed in care since my initial diagnosis. I am in a position to run point #btsm
Liz Salmi @thelizarmy
RT @lisaoleary524: We talked about using the word "care partner" instead of "caregiver" at one point. I like that so much better. #btsm
Melanie Kabo @melaniekabo
UCSF is the only hospital that called my husband to check in on him, that alone was so amazing to him and helpful to feel valued. #btsm
Hedy Wald @hedy_wald
@lisaoleary524 I have mixed feelings on that, my husband is often not a care partner, he needs help #btsm
BTSM chat | #btsm @btsmchat
RT @ShereesePubHlth: T3 Role of care giver in #ClinTrials is evolving. Consider; the caregiver is closest & most constant observer, making…
Lisa O'Leary @lisaoleary524
@hedy_wald @lisaoleary524 I get that. Truthfully Patrick couldn't help me with anything. I just liked the idea of empowering him. #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: The new Clinical Trial Finder that #NBTS launched is a fantastic resource. #btsm
Hedy Wald @hedy_wald
@lisaoleary524 This is a key issue and not discussed enough, the role changes& can be intolerable at times #btsm
BTSM chat | #btsm @btsmchat
RT @CBlotner_: How often do we stop and think about a caregiver's experience as "vaporized?" I hadn't until now. Thank you. #btsm https://t…
Liz Salmi @thelizarmy
On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partners. #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: We talked about using the word "care partner" instead of "caregiver" at one point. I like that so much better. #btsm
Liz Salmi @thelizarmy
WOW MT @MelanieKabo UCSF is only hospital that called my husband to check in on him, that was so amazing and helpful to feel valued #btsm
Melanie Kabo @melaniekabo
RT @TheLizArmy: On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partn…
Dr. Sabine Schwab @sabine_nj
RT @TheLizArmy: On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partn…
Rick Franzo @braintumortalk
@ZHeatherChamp #btsm stands for brain tumor social media
h e a t h e r | #PTEN @zheatherchamp
@TheLizArmy Very similar to parent-child relationship, too. Very very difficult. @lisaoleary524 #btsm
Jeff Cee @jeff_ccc
@BTSMchat T2: I find that attending a support group specific to brain tumour patients & caregivers has been very helpful. #BTSM
h e a t h e r | #PTEN @zheatherchamp
@braintumortalk Nono the other one? Benign something? #btsm
Lisa O'Leary @lisaoleary524
A3 for me there was a lot of fear with trials - not well understood - I felt responsible for saving him and was afraid to try new tx #btsm
Liz Salmi @thelizarmy
@BTSMchat T3: Ppl living w/low grade glioma (LGG) live longer w/disease, are more likely to take lead in care decisions. #btsm
Cheri Costa Marsocci @cherimarsocci
RT @braintumortalk: T2.caregiver support material seems 2 be 4 cancer patients benign tumors can and do have as much impact on families #bt
Hedy Wald @hedy_wald
T3Pt-Repd Distres-6thVitalSign #Cancer Care&Clinl Trials Asses fam caregivr distress? Relevnt2managePt care https://t.co/S3gSi47frb #btsm
Melanie Kabo @melaniekabo
@TheLizArmy And UCSF was my 5th surgery and 4th hospital after 5.5 years with this tumor, so that's saying something! #btsm
Hold Your Head Up 💎 @hyhutriangle
T2: Listen and respect a loved one's desires. Always let them participate in all discussions with caregiver and medical team. #BTSM https://t.co/kEr8XSPe2h
Rae DeRose @theraelynne
#BTSM
Hedy Wald @hedy_wald
@lisaoleary524 How do we fight the fear? A ? 4docs&pharma, how engage pts&caregivers in clinl trials? #btsm
Lisa Fields @lisafieldsms
RT @TheLizArmy: On being a care partner... MT @lisaoleary524 You can feel like a parent-child instead of loving spouse - hard on both partn…
Patti & Ron Gauvin @pattigauvin
@thelizarmy He says awwww. Hugs to you #btsm
Lisa O'Leary @lisaoleary524
@hedy_wald @lisaoleary524 I think it needs to be part of very first conversation for tx - not a last option #btsm
Hedy Wald @hedy_wald
T3 #btsm
Lisa Fields @lisafieldsms
RT @hedy_wald: @lisaoleary524 This is a key issue and not discussed enough, the role changes& can be intolerable at times #btsm
Charlie Blotner @cblotner_
I've spoken with caregivers who think the word in itself dissolves the intimacy of relationships. Thoughts? #btsm https://t.co/04qut6X4uV
Liz Salmi @thelizarmy
@hedy_wald As a clinician, did you find that your access to journal articles/behind the paywall, was helpful for you? Or TMI? #btsm
Lisa O'Leary @lisaoleary524
@hedy_wald If we talk about it right up front, it doesn't seem so "mad scientist" #btsm
Hedy Wald @hedy_wald
T3 fam #cancer caregivrs on grant review panels research authors aswellas study subjects,co-editors at medl journals (Pts already R) #btsm
h e a t h e r | #PTEN @zheatherchamp
@braintumortalk Yes. #btsm
Lisa O'Leary @lisaoleary524
@CBlotner_ It can - physically, obviously - but I will say even in the chaos Patrick and I achieved intimacy we never had before #btsm
Liz Salmi @thelizarmy
@hedy_wald To engage patients in clinical trials: We need to be receiving care at a place that is offering the trials, for one... #btsm
Adam Hayden @adamhayden
@TheLizArmy @BTSMchat Because more experienced navigating health system given years w disease or decisions not as hi stakes w longer survival expectancy? #btsm
h e a t h e r | #PTEN @zheatherchamp
@Sabine_NJ @braintumortalk Really?! Who created it? Never heard or seen it until tonight. #btsm
Hedy Wald @hedy_wald
@TheLizArmy @hedy_wald Good ?, TMI, Thank goodness we trust our medl team @danafarber they guided us well #btsm
Melanie Kabo @melaniekabo
T3 My husband has helped me decide if I should do all of the 3 clinical trials I have done and we talk about the time and benefits. #btsm
BTSM chat | #btsm @btsmchat
Topic T4 is coming up… #BTSM
Dr. Sabine Schwab @sabine_nj
RT @TheLizArmy: @hedy_wald To engage patients in clinical trials: We need to be receiving care at a place that is offering the trials, for…
Jeff Cee @jeff_ccc
RT @BTSMchat: T2: What resources/help from healthcare professionals would u recommend to BT caregivers? What more is needed for caregivers?…
Charlie Blotner @cblotner_
T3: A good, and tough question. What are the #bioethics of marketing towards caregivers' emotions to enroll family in clinical trials? #btsm
Matthew Katz, MD @subatomicdoc
@BTSMchat Better late than never! Matt Katz, radiation oncologist joining. Hi folks #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T3 fam #cancer caregivrs on grant review panels research authors aswellas study subjects,co-editors at medl journals (Pts al…
Matthew Katz, MD @subatomicdoc
RT @TheLizArmy: @hedy_wald As a clinician, did you find that your access to journal articles/behind the paywall, was helpful for you? Or TM…
Hedy Wald @hedy_wald
side effects were toughttoughtough had to d/c The stack of paper abt the trial mentions this risk but we Rdealing w/GBM, we went 4ward #btsm
Rick Franzo @braintumortalk
@ZHeatherChamp benign indicates something is harmless and brain tumors certainly are not!even had a nurse tell me just that!Harmless. #btsm
Charlie Blotner @cblotner_
@lisaoleary524 I love this kind of love. Thank you for sharing, again. #btsm
Lisa Fields @lisafieldsms
Excellent Tweet Chat going on for the next 20 min. #BTSM Brain Tumor Social Media Joint in w/ @TheLizArmy @hedy_wald along with others.
Hedy Wald @hedy_wald
@subatomicdoc @BTSMchat Bless yr heart #btsm
BTSM chat | #btsm @btsmchat
RT @MelanieKabo: T3 My husband has helped me decide if I should do all of the 3 clinical trials I have done and we talk about the time and…
Elizabeth Gundersen @top_gundersen
@BTSMchat @hedy_wald Hi All, just wanted to say thank you for sharing and educating people/providers like myself. I can't stay but will catch up! #BTSM
Liz Salmi @thelizarmy
@subatomicdoc Thanks for joining, Matt! Have you med @xelamb? He's a #radonc new to #btsm. #btsm
h e a t h e r | #PTEN @zheatherchamp
@braintumortalk Oh yes, yes. I have gangliocytoma, know very well benign brain tumors are JUST AS DANGEROUS. Did you create that hashtag? #btsm
Melanie Kabo @melaniekabo
@CBlotner_ for me, my husband is one of the deciding factors in whether or not I do a clinical trial, I see marketing to him ethical. #btsm
Liz Salmi @thelizarmy
RT @MelanieKabo: T3 My husband has helped me decide if I should do all of the 3 clinical trials I have done and we talk about the time and…
Dr. Sabine Schwab @sabine_nj
@ZHeatherChamp @braintumortalk I have no idea, my tumor was not benign. If I took a guess, I'd say Rick himself ;-) #btsm
Hold Your Head Up 💎 @hyhutriangle
Happening now!🧠 #BTSM #BTSMchat https://t.co/dULZsozdU9
Brian Alexander @xelamb
@lisaoleary524 @hedy_wald Agree with this 100%. Trials are about access to new medications and learning as much as we can from every patient's journey. #btsm
Melanie Kabo @melaniekabo
RT @HYHUTriangle: Happening now!🧠 #BTSM #BTSMchat https://t.co/dULZsozdU9
Hedy Wald @hedy_wald
@CBlotner_ I am intrigued w/this vital ?, TY. I spoke on hype&hope at a nanotech conference, Got #ethics ? #btsm
ShereeseM, MS/MBA @shereesepubhlth
@subatomicdoc @BTSMchat Hi Dr. Katz. imagine running into you here. #btsm
Lisa Fields @lisafieldsms
RT @MelanieKabo: T3 My husband has helped me decide if I should do all of the 3 clinical trials I have done and we talk about the time and…
Matthew Katz, MD @subatomicdoc
@TheLizArmy @xelamb Actually I know @xelamb well - we're having coffee soon! Great person in #radonc and glad he's here for #btsm
Brian Alexander @xelamb
@lisaoleary524 @hedy_wald But suggestions about more effectively engaging caregivers are certainly welcome! #btsm
Hold Your Head Up 💎 @hyhutriangle
RT @hedy_wald: T2Need support:Fam #cancer caregivg requires tasks that mayB physicaly,emotionaly,socialy,financiay demandng https://t.co/6V…
Thalía Reséndez @tr_cics
RT @TumorWarrior: The latest Brain Tumor Awareness! https://t.co/8UJbC2KER4 Thanks to @theIBTA #btsm
Liz Salmi @thelizarmy
@hedy_wald Oh, you might know @xelamb, from @DanaFarber. He jumped into the chat earlier. #btsm
Liz Salmi @thelizarmy
@hedy_wald May I ask, which trial(s) have you be participating in? #btsm
Adam Hayden @adamhayden
@TheLizArmy @hedy_wald Such individual decision, I think. Also, diff between enabling access but choosing not to read vs paywall limiting access. #btsm
Lisa O'Leary @lisaoleary524
@CBlotner_ I think that appealing to a spouse is not just ethical, it's critical - patients trust our judgment and we 2b encouraged #btsm
sweetiepie @dawnsonea
@jeff_ccc @braintumortalk @BTSMchat @BrainTumourFdn Yes. I meant that wrong initials #btsm
Charlie Blotner @cblotner_
RT @lisaoleary524: @CBlotner_ I think that appealing to a spouse is not just ethical, it's critical - patients trust our judgment and we 2b…
Liz Salmi @thelizarmy
RT @lisafieldsms: Excellent Tweet Chat going on for the next 20 min. #BTSM Brain Tumor Social Media Joint in w/ @TheLizArmy @hedy_wald alon…
Melanie Kabo @melaniekabo
@subatomicdoc @TheLizArmy @xelamb I start radiation this week and I'm so nervous!! #btsm
Matthew Katz, MD @subatomicdoc
@ShereesePubHlth @BTSMchat Hi Shereese! Good to see you. My typing is my running! #btsm
Hedy Wald @hedy_wald
@xelamb @lisaoleary524 @hedy_wald Dr Wen @danafarber turned 2me2ask &how RUdoing? It is so meaningful, we care4sickness w/clinl trial #btsm
Cheri Costa Marsocci @cherimarsocci
@BTSMchat Just tuned in to find one of my docs in the chat! #btsm
Lisa O'Leary @lisaoleary524
@xelamb @lisaoleary524 @hedy_wald I would have liked to have our team go through trial options - show us how to search sites/forums #btsm
Dr. Sabine Schwab @sabine_nj
T3: I have never thought about it. If I need a clinical trial, I'm guessing I'll be making the decision together with @schwab_msb #btsm
Charlie Blotner @cblotner_
@subatomicdoc @xelamb When tchat & radiation worlds collide..glad to have you both here tonight! I love/hate this small #raconc world. #btsm
Rick Franzo @braintumortalk
@Sabine_NJ @ZHeatherChamp I did as far as I know. #btsm #benignisnotfine
Hedy Wald @hedy_wald
@MelanieKabo @subatomicdoc @TheLizArmy @xelamb Stay strong, radiation oncologists are angels, ask the ?s u need, the techs so nice #btsm
Liz Salmi @thelizarmy
@subatomicdoc @ShereesePubHlth All the cool people are hanging out in @BTSMchat. #btsm
Dr. Sabine Schwab @sabine_nj
@braintumortalk I knew it! #btsm
BTSM chat | #btsm @btsmchat
T4: How might caregivers better make their voices heard and have needs met within the brain tumor community? #BTSM
Hedy Wald @hedy_wald
@lisaoleary524 @xelamb @hedy_wald Interesting point, our team recd a trial as fitting&what protocol husband could join #btsm
Hedy Wald @hedy_wald
T4Get the stats out there 2prevent ostrich as a society #btsm
ShereeseM, MS/MBA @shereesepubhlth
RT @BTSMchat: T4: How might caregivers better make their voices heard and have needs met within the brain tumor community? #BTSM
Liz Salmi @thelizarmy
@MelanieKabo @subatomicdoc @xelamb When? What day do you start? Pls "live tweet" when you are not getting radiation. ;) #btsm
Dr. Sabine Schwab @sabine_nj
T4: Hubby and I will be presenting TOGETHER at the upcoming Patient & Caregiver meeting in NYC by the ABTA! #btsm
Hedy Wald @hedy_wald
T4‘15 NatlAllianceCaregivg:approx43.5 million USadults provided care2adult or child (4serious/chrnic health conditn) in precedng 12mo #btsm
Matthew Katz, MD @subatomicdoc
@MelanieKabo @TheLizArmy @xelamb Hi Melanie: Understandable - radiation is an unknown to many which doesn't help when things feel uncertain. #btsm
Hedy Wald @hedy_wald
@Sabine_NJ that's huge #btsm
Lisa O'Leary @lisaoleary524
A4 Perhaps having fora like this one - a place for caregivers to directly engage multiple specialists #btsm
Hedy Wald @hedy_wald
T4Stress of caregiving can take as many as 10yrs off a caregiver’s life #btsm
ShereeseM, MS/MBA @shereesepubhlth
T4 They can join PACs, speak at conventions, publish more often #BTSM
Hold Your Head Up 💎 @hyhutriangle
Thanks for sharing! https://t.co/zXmqjaZMPK
Hedy Wald @hedy_wald
T4‘15 Natl Alliance Caregiving: #cancer 4th main reason ppl needed family caregivr #btsm
Liz Salmi @thelizarmy
@cherimarsocci I love this so much. #btsm
Matthew Katz, MD @subatomicdoc
@MelanieKabo @TheLizArmy @xelamb The radiation therapists are usually fantastic, very good 'people persons'. It takes a week or so to settle in. Wishing you well #btsm
Matthew Katz, MD @subatomicdoc
RT @hedy_wald: @MelanieKabo @subatomicdoc @TheLizArmy @xelamb Stay strong, radiation oncologists are angels, ask the ?s u need, the techs s…
Hedy Wald @hedy_wald
@ShereesePubHlth Yes but...if caring4ill pt not so easy2travel etc, conferences need2help as best possible #btsm
ShereeseM, MS/MBA @shereesepubhlth
T4 In case of clarification; PACs= Patient Advisory Committees. #BTSM
Lisa O'Leary @lisaoleary524
A4 Having caregivers of survivors and those who are gone speak at BT groups - let them feel heard and understood #btsm
Adam Hayden @adamhayden
@hedy_wald @CBlotner_ Tough not to make emotional appeal, right? Difficult to be objective when life is ostensibly on the line. But marketing to that, hmm. #btsm
Rick Franzo @braintumortalk
@Sabine_NJ Excellent!! That's perfect!! #btsm #benignisnotfine
Melanie Kabo @melaniekabo
@Sabine_NJ Wish I could be there with my hubby to see you both present! #btsm
Hedy Wald @hedy_wald
T4 1 in 5 carers gives up employment to care in UK https://t.co/OEeCIdiSnZ #btsm
Liz Salmi @thelizarmy
@ShereesePubHlth Sometimes referred to as PFACs = Patient-Family Advisory Councils #btsm
Matthew Katz, MD @subatomicdoc
@xelamb @hedy_wald @MelanieKabo @TheLizArmy Definitely! Weekly visits with your #radonc doctor are an opportunity for continued support, learning and help. #btsm
Dr. Sabine Schwab @sabine_nj
RT @ShereesePubHlth: T4 They can join PACs, speak at conventions, publish more often #BTSM
I Live Now Rachel 💎 @kickbraintumors
RT @HYHUTriangle: Happening now!🧠 #BTSM #BTSMchat https://t.co/dULZsozdU9
Lisa O'Leary @lisaoleary524
T4 I didn't get involved until after Patrick's death, but I am feeling more and more empowered the more engaged I am #btsm
Charlie Blotner @cblotner_
@hedy_wald .@prof_jdb works at the intersection of science and technology (among many others) re: #bioethics. Another great sounding board.. #btsm
ShereeseM, MS/MBA @shereesepubhlth
@TheLizArmy There's not enough of them IMHO but they are growing #BTSM
sweetiepie @dawnsonea
@BTSMchat T4 I like the peer to peer matching idea...so many experience are unique to brain cancer. I wanted someone to "get" me & my experience #btsm
Hedy Wald @hedy_wald
T4 What not2say when Ur speaking w/a family brain #cancer #caregiver “Is it in remission?” It ain’t. #btsm
Charlie Blotner @cblotner_
RT @BTSMchat: T4: How might caregivers better make their voices heard and have needs met within the brain tumor community? #BTSM
Liz Salmi @thelizarmy
@BTSMchat T4: Husband is currently playing video games so I am asking if he needs any help having his voice heard... #btsm
Melanie Kabo @melaniekabo
T4 Asking questions of the doctors that the patient doesn't think of and by us patients helping them get their needs met. #btsm
nobism @nobismhealth
RT @hedy_wald: T3 #Patientengagement #patientexperience #patientempowerment, #SDM Can we use word caregiver2? #btsm
Charlie Blotner @cblotner_
@Sabine_NJ Love love love this!!! #btsm
Lisa O'Leary @lisaoleary524
T4 I'm an atty and considering going back 2 school for cont educ program in Health Care Advocacy - use experience to help others #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T4Stress of caregiving can take as many as 10yrs off a caregiver’s life #btsm
Hedy Wald @hedy_wald
T4 Orgns w/better pt exp: better safety records&report better financial margins https://t.co/FXDaXrGAYf #caregiver exp tied2pt exp! #btsm
Patti & Ron Gauvin @pattigauvin
I get so much support by being an advocate for @nbtstweets #btsm
Matthew Katz, MD @subatomicdoc
@CBlotner_ @xelamb #radonc is a small specialty. I'm getting old enough that it's getting really small world. #btsm
Hedy Wald @hedy_wald
@lisaoleary524 where is that program? good 4 U #btsm
Hold Your Head Up 💎 @hyhutriangle
So true! https://t.co/89vh2AsTxp
Charlie Blotner @cblotner_
@hedy_wald Citation? :) #btsm
Lisa O'Leary @lisaoleary524
@hedy_wald @lisaoleary524 There are lots of them, but looking at UC Berkeley Extension - I don't think I can afford doing full MPH #btsm
Dr. Sabine Schwab @sabine_nj
RT @hedy_wald: T4Stress of caregiving can take as many as 10yrs off a caregiver’s life #btsm
Rick Franzo @braintumortalk
T4. Keep participating in support groups, the meet up dynamic is crucial for comparing notes with others in similar situations #btsm
Liz Salmi @thelizarmy
@lisaoleary524 If you do this... I hope it's in Sacramento! #btsm
Hedy Wald @hedy_wald
@CBlotner_ @hedy_wald re: 10 yrs off a caregiver's life? that was Eppel et al #btsm
Charlie Blotner @cblotner_
@ShereesePubHlth Hard to do these things when you're caregiving, though! #btsm
Hedy Wald @hedy_wald
@CBlotner_ @ShereesePubHlth Exactly #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: A4 Having caregivers of survivors and those who are gone speak at BT groups - let them feel heard and understood #btsm
BTSM chat | #btsm @btsmchat
RT @hedy_wald: T4 1 in 5 carers gives up employment to care in UK https://t.co/OEeCIdiSnZ #btsm
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: T4 I'm an atty and considering going back 2 school for cont educ program in Health Care Advocacy - use experience to hel…
Dr. Sabine Schwab @sabine_nj
RT @MelanieKabo: T4 Asking questions of the doctors that the patient doesn't think of and by us patients helping them get their needs met.…
Lisa O'Leary @lisaoleary524
Would also help to have resources for financial challenges for patients/survivors - I know that I didn't know what 2 expect w/o him #btsm
Liz Salmi @thelizarmy
@hedy_wald @CBlotner_ I've heard 20 years off a caregivers life, shortened life for sure. #btsm
Hedy Wald @hedy_wald
What abt society waking up&smelling the coffee? Caregiver benefits if have2quit work? Retraining? this is real #btsm
Liz Salmi @thelizarmy
@lisaoleary524 Lisa, you are seriously a badass wealth of knowledge/insight into what is lacking for caregivers. #btsm
Melanie Kabo @melaniekabo
@TheLizArmy @BTSMchat Mine just put a movie on for the kids and went to shower since we were at the water park all day. #btsm
BTSM chat | #btsm @btsmchat
As we near the end of the hour, please share your final thoughts on tonight’s topic. #BTSM
Lisa O'Leary @lisaoleary524
@TheLizArmy @hedy_wald @CBlotner_ No question, I have had more health problems since Patrick died than I care to admit #btsm
Liz Salmi @thelizarmy
RT @hedy_wald: What abt society waking up&smelling the coffee? Caregiver benefits if have2quit work? Retraining? this is real #btsm
Hedy Wald @hedy_wald
T4 caregivr distress canB distressing4pts&have long-term health effects on both pts&caregivrs https://t.co/6VbBRYibvu #btsm
Charlie Blotner @cblotner_
T4: This puts the responsibility to do even more on an already strained population. Start by asking what we can do with and for them. #btsm
Hedy Wald @hedy_wald
@lisaoleary524 @TheLizArmy @hedy_wald @CBlotner_ Indeed that's true I'm sorry2hear it but not surprised #btsm
ShereeseM, MS/MBA @shereesepubhlth
@CBlotner_ And yet some do it. Also, the options I mentioned have remote and mobile optimization . #BTSM
Dr. Sabine Schwab @sabine_nj
Is there a caregiver appreciation day in the US? #btsm
Lisa O'Leary @lisaoleary524
@TheLizArmy @lisaoleary524 I hope someday I'll be able to transform the experience into my vocation - caregivers need help too #btsm
Rick Franzo @braintumortalk
@hedy_wald I believe it I know how hard it hit my wife, and she's one of the toughest people Ever! Takes a huge toll!#btsm #benignisnotfine
BTSM chat | #btsm @btsmchat
RT @lisaoleary524: @TheLizArmy @lisaoleary524 I hope someday I'll be able to transform the experience into my vocation - caregivers need he…
Hedy Wald @hedy_wald
At cancer conference I heard someone say Alzheimers Assoc way ahead of cancer community in advocating4caregivers #btsm
Sexy Health Tips @sexyhealthtips
RT @lisaoleary524: T4 I'm an atty and considering going back 2 school for cont educ program in Health Care Advocacy - use experience to hel…
Liz Salmi @thelizarmy
@hedy_wald TWITTER POLL: Should all caregivers seek counseling? Therapy? #btsm
Hedy Wald @hedy_wald
@braintumortalk @hedy_wald It's something that is difficult2talk abt, caregiver doesn't have #cancer but we suffer #btsm
Adam Hayden @adamhayden
@subatomicdoc @CBlotner_ @xelamb Aw, you don't look a day over proton therapy! ;) #btsm
Charlie Blotner @cblotner_
@hedy_wald Thank you for joining us tonight, Hedy. I love a guest mod who can cite their sources and provide links to further reading! #btsm
Hedy Wald @hedy_wald
@Sabine_NJ We need one 4syre #btsm
Lisa O'Leary @lisaoleary524
@TheLizArmy @hedy_wald Some people really don't feel comfortable in counseling - but it literally saved my life. Was suicidal after P. #btsm
Matthew Katz, MD @subatomicdoc
@TheLizArmy @hedy_wald @CBlotner_ The stressors for caregivers may differ for people with brain tumors vs other cancers https://t.co/gfz9iTzv8K #btsm
Hedy Wald @hedy_wald
I meant 4 sure #btsm
Guy Lipof - גיא @project2program
@BTSMchat T2, When Susie was diagnosed in '99, there was not much on the internet. Now there are great primers from all tertiary cancer centers. #BTSM
Liz Salmi @thelizarmy
@adamhayden You're the worst/best! #btsm
Jeff Cee @jeff_ccc
@hedy_wald Agree! I totally go out of my way to, genuinely, thank people & praise people. The world needs more positivity. #BTSM
Liz Salmi @thelizarmy
RT @hedy_wald: At cancer conference I heard someone say Alzheimers Assoc way ahead of cancer community in advocating4caregivers #btsm
Melanie Kabo @melaniekabo
RT @CBlotner_: @hedy_wald Thank you for joining us tonight, Hedy. I love a guest mod who can cite their sources and provide links to furthe…
ShereeseM, MS/MBA @shereesepubhlth
@TheLizArmy @hedy_wald When I was a Peds admin director, I thought this was a very good idea for parents of medically fragile children #btsm
Hedy Wald @hedy_wald
@lisaoleary524 @TheLizArmy @hedy_wald Need a space to yell&cry even if not suicidal, this is a huge trauma4caregvers, life is upended #btsm
Lisa Fields @lisafieldsms
MT @MelanieKabo @UCSF only hospital who called husband to check on him. Amazing to Him/Helpful to feel Valued. #btsm cc @ConsanoScott
BTSM chat | #btsm @btsmchat
Just a few minutes left... Please join us in THANKING our special guest, Dr. @hedy_wald! #BTSM
Lisa Fields @lisafieldsms
RT @CBlotner_: @hedy_wald Thank you for joining us tonight, Hedy. I love a guest mod who can cite their sources and provide links to furthe…
Matthew Katz, MD @subatomicdoc
@TheLizArmy @hedy_wald What would be ideal is if all caregivers can get access to training, learning how to help #btsm patient, self and other family
Lisa Fields @lisafieldsms
RT @MelanieKabo: T4 Asking questions of the doctors that the patient doesn't think of and by us patients helping them get their needs met.…
Hedy Wald @hedy_wald
@jeff_ccc @hedy_wald Attitude of #gratitude warms the heart, helps get u thru the day #btsm
Hold Your Head Up 💎 @hyhutriangle
T4: Every caregivers situation is different. Its good to know where to get your information and assistance. #BTSM @BTSMchat
Leilani Graham @leilanirgraham
👏👏👏 yes. https://t.co/U642Pa9hkv
Charlie Blotner @cblotner_
@adamhayden @subatomicdoc @xelamb The #radonc nerd in me is screaming. This is too good @adamhayden. 😂🤓 #btsm
Lisa O'Leary @lisaoleary524
@hedy_wald @lisaoleary524 @TheLizArmy Absolutely. Need to feel safe to express your pain without guilt. #btsm
BTSM chat | #btsm @btsmchat
And thank you to all of the AMAZING caregivers who joined us tonight to share your perspectives. You are always welcome in #btsm! #btsm
Charlie Blotner @cblotner_
RT @subatomicdoc: @TheLizArmy @hedy_wald @CBlotner_ The stressors for caregivers may differ for people with brain tumors vs other can…
Melanie Kabo @melaniekabo
@hedy_wald @lisaoleary524 @TheLizArmy Agreed, my husband and I went for a while, It's a great neutral place to talk and get support #btsm
Dr. Sabine Schwab @sabine_nj
RT @BTSMchat: And thank you to all of the AMAZING caregivers who joined us tonight to share your perspectives. You are always welcome in #b
Matthew Katz, MD @subatomicdoc
@adamhayden @CBlotner_ @xelamb Thanks! But I caught the tail end of planning some radiation with fluoroscopy @sloan_kettering - coming up on 20 yrs #btsm
Lisa O'Leary @lisaoleary524
@BTSMchat @hedy_wald Thank you so much! I can't believe it's over already. This was wonderful. I'll be back!! #btsm
BTSM chat | #btsm @btsmchat
Mark your calendars for the next #BTSM chat: Sunday, October 1.
Hedy Wald @hedy_wald
@hedy_wald @jeff_ccc Awwwww shucks....it's an honor&derived support&love here.It's been an ordeal, an unanticipated 1, try my best #btsm
Lisa O'Leary @lisaoleary524
Right before NBTS Scientific Summit! I'll be there! #btsm
Hedy Wald @hedy_wald
@lisaoleary524 @BTSMchat @hedy_wald Seriously time flies #btsm
Charlie Blotner @cblotner_
@TheLizArmy Hard to say that any sort of broad sweeping, mandatory policy is always going to be difficult to be the right fit for all. #btsm
Lisa Fields @lisafieldsms
Thank you @hedy_wald for being such a valuable guest #BTSM. Your Knowledge #cargiving @Clinical and Twitter Skills are Remarkable.
BTSM chat | #btsm @btsmchat
@hedy_wald Thank you, Hedy! Thank you for suggesting this important topic! My husband and I are talking more about caregiver balance. #btsm
Cheri Costa Marsocci @cherimarsocci
@BTSMchat @hedy_wald Tuned in a little late, but thanks to all - always informative. #btsm
Guy Lipof - גיא @project2program
@BTSMchat T2, I now have access to neuro-onc journals & follow clinical trials. For articles I do not have access to, I ask doctors for them. #BTSM
Melanie Kabo @melaniekabo
@lisaoleary524 When and where is the NBTS Scientific Summit? #btsm
Hold Your Head Up 💎 @hyhutriangle
Advocate for yourself: I love helping to spread more awareness on brain cancer/ brain tumors. #btsm #btsmChat Everyone have a goodnight! TY https://t.co/VXdOeF3jZV
Hedy Wald @hedy_wald
@HYHUTriangle @BTSMchat Indeed there is no 1 representative story, need "narrative humility" from practitiioners2hear caregiver story #btsm
Hedy Wald @hedy_wald
@MelanieKabo @lisaoleary524 Yes what is that about? #btsm
Liz Salmi @thelizarmy
Thank you, Hedy! Thank you for suggesting this important topic! My husband and I are talking more about caregiver balance. #btsm
Matthew Katz, MD @subatomicdoc
Hey now! Now I am feeling older 😲 #btsm https://t.co/grmKwIUoUe
Hedy Wald @hedy_wald
@lisafieldsms @hedy_wald @clinical You rock my dear , full of praise and kind comments #btsm
BTSM chat | #btsm @btsmchat
RT @cherimarsocci: @BTSMchat @hedy_wald Tuned in a little late, but thanks to all - always informative. #btsm
Lisa O'Leary @lisaoleary524
@MelanieKabo @lisaoleary524 October 5-6 in Boston for Natl Brain Tumor Society - DM me I'll send deets! #btsm
Hedy Wald @hedy_wald
@TheLizArmy Oy I want to understand caregiver "balance" ;-) #btsm
Matthew Katz, MD @subatomicdoc
@lisafieldsms @hedy_wald @clinical Hi LIsa! Good to see you #btsm
BTSM chat | #btsm @btsmchat
Thanks for joining us! Your moderators tonight were @TheLizArmy, @CBlotner_ & @AdamHayden. Chat topics were developed by @hedy_wald. #btsm
Lisa O'Leary @lisaoleary524
https://t.co/VdpwGN2K3a #btsm
Rick Franzo @braintumortalk
@hedy_wald I'm convinced that caregivers suffer more than patients on a certain level. Outside looking in vs inside looking out #btsm
Matthew Katz, MD @subatomicdoc
@hedy_wald @lisaoleary524 @BTSMchat Thank you all for a great chat, have a great night and remaining Labor Day weekend #btsm
Lisa Fields @lisafieldsms
@subatomicdoc @hedy_wald @clinical Hi Matt. Thanks. It was a great chat #BTSM.
Liz Salmi @thelizarmy
@hedy_wald We're figuring it out! #btsm
Matthew Katz, MD @subatomicdoc
RT @BTSMchat: Thanks for joining us! Your moderators tonight were @TheLizArmy, @CBlotner_ & @AdamHayden. Chat topics were developed by @hed
Hedy Wald @hedy_wald
@braintumortalk @hedy_wald A huge topic. Full of energy,empty nest plans&dreams are gone,etc. feeling like no 1 understds except here #btsm
Samira @srajabi
RT @BTSMchat: While you're waiting for #BTSM to start at 6pm PT, check out this article by our guest @hedy_wald: https://t.co/5XY8hcQ3zf
Hedy Wald @hedy_wald
@subatomicdoc @hedy_wald @lisaoleary524 @BTSMchat tx 4joining us, taking of yr free time 2care&share #btsm
Samira @srajabi
RT @TheLizArmy: Everyone dealing w/brain cancer could learn a lot from @lisaoleary524's experience as a caregiver. Not all ☀️ & 🌈. #btsm
Samira @srajabi
RT @BTSMchat: Before we begin, we want to take a moment to remember our #BTSM friend @MrRobJohn who died from glioblastoma a few…
BTSM chat | #btsm @btsmchat
A transcript of tonight's #BTSM chat can be found here: https://t.co/PoLP2UgkBf
Melanie Kabo @melaniekabo
Good night all. Radiation and Temador start for me sometime this week. Hoping to finish quickly because hubs booked a Disney Cruise! #btsm
Hedy Wald @hedy_wald
@BTSMchat @TheLizArmy @CBlotner_ @adamhayden @hedy_wald TY! #btsm
Rick Franzo @braintumortalk
@hedy_wald thank you so much for hosting this chat this evening! Very informative and interesting! #btsm #benignisnotfine
Brian Alexander @xelamb
Thanks everyone. Wonderful topic! Great to hear all the stories and perspectives. #btsm
Lisa O'Leary @lisaoleary524
@hedy_wald @BTSMchat @TheLizArmy @CBlotner_ @adamhayden Thank you all! Goodnight! #btsm
Liz Salmi @thelizarmy
@MelanieKabo Now that's something to look forward to! #btsm
Liz Salmi @thelizarmy
@lisaoleary524 Great to "see" you on here. We need to get Thai food again soon. ;) #btsm
Margaret Chisolm, MD @whole_patients
RT @lisaoleary524: We talked about using the word "care partner" instead of "caregiver" at one point. I like that so much better. #btsm
Adam Hayden @adamhayden
I wish the first Sunday or the month came more often, than, well, monthly. Great chat, & thx for this community! Best, all! Cheers-A. #btsm
BTSM chat | #btsm @btsmchat
RT @adamhayden: I wish the first Sunday or the month came more often, than, well, monthly. Great chat, & thx for this community! Best, all!…
Hedy Wald @hedy_wald
Our wonderful radiation oncologist, bless yr heart @danafarber 1of the reasons my husband walks this earth 2day #btsm https://t.co/vt09EAwwtF
Rick Franzo @braintumortalk
@BTSMchat @hedy_wald thank you so much for hosting this chat this evening! Very informative and interesting! #btsm #benignisnotfine
BTSM chat | #btsm @btsmchat
Top 10 #BTSM by Mentions: @hedy_wald @lisaoleary524 @thelizarmy @cblotner_ @melaniekabo @sabine_nj @xelamb @braintumortalk @zheatherchamp
Hedy Wald @hedy_wald
@lisaoleary524 Beautiful2C our doc present there "Maximizing Opps: Therapeutic Strategies&Blood-Brain Barrier Dr Wen&colleagues #btsm
Melanie Kabo @melaniekabo
RT @BTSMchat: Top 10 #BTSM by Mentions: @hedy_wald @lisaoleary524 @thelizarmy @cblotner_ @melaniekabo @sabine_nj @xelamb @braintumortalk @z
Hedy Wald @hedy_wald
@braintumortalk @BTSMchat @hedy_wald Thank U 4 being U #btsm
Hedy Wald @hedy_wald
@MelanieKabo Hub back on Temadar next week once again here we go, we'll be thinking of u #btsm
BTSM chat | #btsm @btsmchat
Top10 #BTSM Impressions: @subatomicdoc @thelizarmy @shereesepubhlth @hyhutriangle @hedy_wald @cblotner_ @zheatherchamp @vickyyyf
Rick Franzo @braintumortalk
@hedy_wald absolutely true #btsm
Hedy Wald @hedy_wald
Thanks all have a good night, best wishes4strength, fortitude, courage, love2give&receive #btsm
Melanie Kabo @melaniekabo
@hedy_wald Best of luck to him. I'll be doing the low dose through radiation and then the high dose for 6 months after a month break. #btsm
BTSM chat | #btsm @btsmchat
#BTSM by the Numbers tonight: 1.029M Impressions 486 Tweets 40 Participants 449 Avg Tweets/Hour 12 Avg Tweets/Participant #btsm
Matthew Katz, MD @subatomicdoc
@hedy_wald @lisaoleary524 @BTSMchat My pleasure Hedy! I learn more than I can give back by participating in the #btsm community. Thank you all 4 helping me become a better doc💚
Hold Your Head Up 💎 @hyhutriangle
RT @BTSMchat: Top10 #BTSM Impressions: @subatomicdoc @thelizarmy @shereesepubhlth @hyhutriangle @hedy_wald @cblotner_ @zheatherchamp @vicky
Guy Lipof - גיא @project2program
@BTSMchat T3, Being aware of appropriate trials nearby and having a list of questions along w/ understanding adverse events/ side effects is key #BTSM
Hedy Wald @hedy_wald
@MelanieKabo @hedy_wald Do nice things for you, treat yourself, stay strong, we did ok, he's alive 5 years out w/GBM #btsm

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Understand what the conversations are all about for any healthcare topic and how it's changing over time.
Go deeper by learning how the healthcare stakeholders differ and what they have in common.
And finally drill down to the individual tweets to understand the context of the trending terms.

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Pharma Engagements with Patients and Doctors
Symplur at the White House

#BTSM Twitter Transcript and Analytics

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