#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
Heather 🇺🇸 @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
Heather 🇺🇸 @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…
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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
Heather 🇺🇸 @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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