#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | #BTSM chat @BTSMchat Welcome to #BTSM chat! Please remember to use the hashtag (#BTSM) in order to take part in tonight’s conversation. |
 | Debi Cirasole @DebiCasserole RT @BTSMchat: #BTSM tweet chat is back: #BTSM tweet chat is back: Sunday, October 6! 🗓️ 👉This month we're discussing HOW TO PLAN your life while facing a brain tumor 👉How were your plans altered? 👉How do you adjust? Set your ⏰ for 6pmPT/9pm ET #braincancer #braintumor https://t.co/n96JTQnRhK |
 | St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat I have 25 minutes left in a novel I’m reading... but I am here to grace you all with an hour of my presence. #BTSM |
| Debi Cirasole @DebiCasserole RT @BTSMchat: #BTSM tweet chat starts in 2 hours! Facing a brain tumor--as a patient or a care partner--shakes up your life! Join us tonight as we contemplate how uncertainty can affect us in different ways. We're in this together. 🤜🤛 https://t.co/1IQJKtpn9l |
| St_Molly_AgentofChaos @Lifeiskitsch RT @JeremyPivor: Expect higher tweet volume during the next hour for this month's #BTSM Twitter chat on Life Planning & Brain Tumors. Everyone is welcome! |
| Debi Cirasole @DebiCasserole RT @Lifeiskitsch: @BTSMchat #BTSM https://t.co/DIM9meEblQ |
| #BTSM chat @BTSMchat Let’s start w/intro’s while we wait for the chat to start. Tweet #BTSM if you’re only here to listen. Welcome everyone! Clinical, academic, research, or industry professionals: Feel free to share credentials and affiliations. Thanks for joining! #BTSM |
 | Lisa O'Leary @lisaoleary524 Hi all! Lisa here. Former care partner to my husband Patrick who died of #GBM on 7/11/15. He had his gross total resection 5 years ago tomorrow. #btsm |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ It’s this time of the month! #BTSM Tweet Chat happening now! |
| Debi Cirasole @DebiCasserole @BTSMchat Planning *used* to be my favorite. That really made it hard in the beginning! The depression took a hold quick and it was dark. #btsm |
 | Sean Sachdev, MD @SeanSachdevMD @BTSMchat Looking forward to listen in and learn tonight, with this important topic #btsm |
| #BTSM chat @BTSMchat #BTSM (brain tumor social media) is a patient-run, grassroots Twitter community and is not owned by any organization. If you are here just to listen, please tweet “#BTSM” so we know you’re in the audience. |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Molly. Metro-Detroit. 39. Anaplastic Astrocytoma. Dx 10/2016. Currently stable. MRI on coming up on the 22nd. 🤞 #BTSM |
 | OurBrainBank @ourbrainbank Oops forgot to add #BTSM |
 | Alireza Mansouri @DrAMansouri Really looking forward to tonight's discussion as this is a very important topic! #btsm |
 | Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat 👋🏻👋🏻👋🏻 Neuro-onc in Charlotte. Hi everyone #btsm |
| #BTSM chat @BTSMchat While we are waiting for everyone to join… Is anyone recognizing a milestone this month? #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Hi! I’m Sabine, 5+ year survivor of AA3, and member of this awesome @BTSMchat organizer gang. #btsm |
| #BTSM chat @BTSMchat @AshleySumrallMD Thanks for joining, Dr. Sumrall! #btsm |
 | KateWhy @KattyBatty1 @BTSMchat #BTSM. Parent of a teen who had a 2nd surgery this summer on his tumor. Balancing somewhere between caregiving and nagging. 😁 |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @Marillenbluete Hi girl, how are you? Lass uns nochm treffen! #btsm |
 | Liz Salmi @TheLizArmy @BTSMchat Liz here in Nor Cal. Living with grade II astrocytoma w/all of the favorable biomarkers. Long time #BTSM-er. Serving on the @NBTStweets Board of Directors. Now working in healthcare splitting my time between pt access to med records & palliative care. |
 | Michael Ivan, MD, MBS, FAANS @michaelivanmd Great topic tonight! Looking forward to hearing the discussion. #BTSM |
 | Emily McIntosh @mcintose @BTSMchat 👋. I'm Emily --> patient, advocate, and PhD candidate in biomechanics #BTSM |
| #BTSM chat @BTSMchat @SeanSachdevMD We are glad you're here, Dr. Sachdev! #BTSM |
 | Heather 🇺🇸 @ZHeatherChamp I’m Heather. Person living with 2 #rare brain tumors called Gangliocytoma. Continuously looking for a place to fit in. #btsm |
| #BTSM chat @BTSMchat Tonight’s theme is: “Now What? Life Planning & Brain Tumors” A diagnosis changes many aspects of life. Uncertainty, physical/emotional symptoms, treatment, etc. can have many affects. How are life plans altered, how do we adjust, why? Tonight, we plan to talk about this #BTSM |
 | SeleneSeltzer @SeleneSeltzer Here to listen and learn. Clinical Healthcare Chaplain spec in Palliative Care. #btsm |
 | Toph @IamTheToph Toph. Acoustic Neuroma diagnosis on Friday the 13th in the summer of 2018. Watch and wait. Two MRIs showed no growth, good til next Summer. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch RT @BTSMchat: Tonight’s theme is: Tonight’s theme is: “Now What? Life Planning & Brain Tumors” A diagnosis changes many aspects of life. Uncertainty, physical/emotional symptoms, treatment, etc. can have many affects. How are life plans altered, how do we adjust, why? Tonight, we plan to talk about this #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Tonight’s theme is: Tonight’s theme is: “Now What? Life Planning & Brain Tumors” A diagnosis changes many aspects of life. Uncertainty, physical/emotional symptoms, treatment, etc. can have many affects. How are life plans altered, how do we adjust, why? Tonight, we plan to talk about this #BTSM |
| #BTSM chat @BTSMchat Tonight’s chat will be organized by themes. We will announce FOUR topics (T1, T2 etc). Please label your answers with T1, T2, etc to make transcript easier to follow. #BTSM |
 | Manmeet Ahluwalia, MD, MBA, FASCO @BrainTumorDoc @BTSMchat Medical oncologist @ClevelandClinic. Hi everyone #btsm |
| #BTSM chat @BTSMchat About to post Topic T1… #BTSM |
| #BTSM chat @BTSMchat @BrainTumorDoc @ClevelandClinic Welcome! #BTSM |
| #BTSM chat @BTSMchat T1 // #BTSM -Patients/care partners: What areas of your life did your brain tumor diagnosis affect regarding the plans you had made before diagnosis? -Clinicians: What priority changes are the most common you observe in a patients’ life post-diagnosis? |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T1 // #BTSM -Patients/care partners: What areas of your life did your brain tumor diagnosis affect regarding the plans you had made before diagnosis? -Clinicians: What priority changes are the most common you observe in a patients’ life post-diagnosis? |
| Lisa O'Leary @lisaoleary524 T1 Everything changed after Patrick was dx'd. He required 24/7 care from the beginning. We were in the process of buying a house-that stopped. Had to move to a ground floor apartment without stairs. Plans for a family, gone. Grief for the life we hoped for started fast. #btsm |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: T1 // #BTSM -Patients/care partners: What areas of your life did your brain tumor diagnosis affect regarding the plans you had made before diagnosis? -Clinicians: What priority changes are the most common you observe in a patients’ life post-diagnosis? |
 | Jeremy Pivor @JeremyPivor @BTSMchat T1: I was diagnosed at 12, so my dx molded my plans as I grew up, but because of recurrences in 2014 & 2018, where I was living, my job, my schooling, my dreams, etc. were all affected. BUT I wouldn't have met the man I love or recognized my life values if nothing changed. #BTSM |
 | Mariah Jae @MariahJaeee @BTSMchat T1: it would be easier to say what area of my life planning WASN’T effected. I’m still dealing with the trickle down of the changes I made post diagnosis. I push myself to find a middle road between what I wanted before & the new life I imagined immediately after diagnosis #BTSM |
| OurBrainBank @ourbrainbank T1 diagnosis of #GBM affects everyone differently, except yet to find anyone who wasn't/isn't overwhelmed to some degree. Common areas of life affected range from individual day-to-day health (eg has surgery created deficits) to psychological (how 2 cope w news) #btsm |
| Debi Cirasole @DebiCasserole @BTSMchat 👋 I'm Debi - 3x crani, 1x spine-y (😉😅) and all time fall-y-apart-y. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1// Well, I sure wasn’t thinking about anything other than normal day-2-day stuff. My mom seemed fine. Everything seemed fine. And then the chandelier fell. I could’ve still had kids. Maybe. I didn’t think life would have gotten so... fast forwarded. #BTSM |
 | Ruth Leslie-Rose @rleslierose RT @BTSMchat: Welcome to #BTSM chat! Please remember to use the hashtag (#BTSM) in order to take part in tonight’s conversation. |
| #BTSM chat @BTSMchat "Took me a long time after the last surgery to start making plans again and meaning them." Powerful stuff @srajabi #BTSM |
| Debi Cirasole @DebiCasserole RT @BTSMchat: Tonight’s theme is: Tonight’s theme is: “Now What? Life Planning & Brain Tumors” A diagnosis changes many aspects of life. Uncertainty, physical/emotional symptoms, treatment, etc. can have many affects. How are life plans altered, how do we adjust, why? Tonight, we plan to talk about this #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat T1 Big change was to self-identity. From expectation of life to re-labeling as 'patient' and baggage that comes with that. Still stunned that the Standard of Care in GBM does not include psych support #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1: Depends on the pt. Overall, these are the big issues after the newness wears off: work, insurance, income, driving, goals, travel, family planning, faith. #btsm @BTSMchat |
| Alireza Mansouri @DrAMansouri @BTSMchat T1 clinician: @ those affected by brain tumors, was consulting the clinician/ healthcare provider helpful in making life plans? #BTSM |
| Jeremy Pivor @JeremyPivor @Lifeiskitsch @BTSMchat Yeah the whole change in the concept of "time" is bewildering. It's more tangible, but also can easily get out of grasp. #BTSM |
| Emily McIntosh @mcintose @BTSMchat T1. Ooof it is probably easier to list the areas that weren't impacted. Oddly enough, my mental capacities were probably the least altered. But, finances, emotions, physical fitness, career focus, relationships, friendships were all altered. Not always for the worse, though #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T1. I was 29 at dx--still a young-ish adult figuring out how to grow up. Was dating. Had bought a condo on my own. I was independent and doing my own thing. Then I was dx'd w/brain cancer and suddenly I had to rely on others for help. It sucked. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T1: The area that was affected the most was my career. Family planning as well, but not right after diagnosis. Some minor things like travel plans, .. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @ourbrainbank @BTSMchat Such poor reimbursement for mental health issues. Also, limited availability of professionals. Agree so much w need for this! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1//(part2) I say I don’t want kids, so it’s OK... but nothing in my life ever happened normal, anyway, you know? I was sort of wayward my whole life— & when chandelier fell? It also brought me to life more than before. I was alive before, but now I’m *living*. Tick-tock. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1c: 1/3 Family planning. This one is tough. Seek expert opinions early on fertility preservation. Ask questions! If your tumor IS terminal, do you still want to try to have children? Have those tough decisions early on w your loved ones (please). #btsm @BTSMchat |
| Michael Ivan, MD, MBS, FAANS @michaelivanmd @ourbrainbank @BTSMchat Can’t agree more with this @ourbrainbank Mental health issues occurs through out the entire course from diagnosis to treatment to recurrence. We need more mental health specialists with a cancer focus to be involved #btsm |
| Jeremy Pivor @JeremyPivor RT @ourbrainbank: @BTSMchat T1 Big change was to self-identity. From expectation of life to re-labeling as 'patient' and baggage that comes with that. Still stunned that the Standard of Care in GBM does not include psych support #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @ourbrainbank: @BTSMchat T1 Big change was to self-identity. From expectation of life to re-labeling as 'patient' and baggage that comes with that. Still stunned that the Standard of Care in GBM does not include psych support #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat T1 Immediate writing of will, identifying guardians for kids, endless work on LTD and benefits, actually felt good to get these all sorted so could then focus on tackling disease #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @AshleySumrallMD: @BTSMchat T1: Depends on the pt. Overall, these are the big issues after the newness wears off: @BTSMchat T1: Depends on the pt. Overall, these are the big issues after the newness wears off: work, insurance, income, driving, goals, travel, family planning, faith. #btsm @BTSMchat |
| #BTSM chat @BTSMchat Topic T2 is coming up… #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat *my mom was “fine” until she was diagnosed with pancreatic cancer several months after my diagnosis. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1c: 2/3 Family planning. Aside from 1-2 tumor types, there is no convincing evidence that pregnancy hastens tumor growth. Meningiomas have multiple reasons why they grow: hormonal changes, blood flow, etc. https://t.co/Xws9gIztSH #btsm @BTSMchat (reminder: NOT medical advice) |
| Jeremy Pivor @JeremyPivor Huge need for psycho-social support after every brain tumor diagnosis. Physical and mental health go hand-in-hand. Thanks for sharing @ourbrainbank |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1c: 3/3 Family planning: astrocytomas. HARD discussion b/c most are terminal illnesses. Controversial! Still, pregnancy can be safe for women (d/w your dr). The best info comes from @Tsarmstrong01 @MRGneuroonc @MDABrainSpine @J_deGrootMD https://t.co/WRg6EcKW0u #btsm @BTSMchat |
| Lisa O'Leary @lisaoleary524 @AshleySumrallMD @BTSMchat I wish we had known there was time to ask questions. Surgery seemed like an emergent situation. I am still working on the sadness that we didn't get to have a family, so that I would have some part of Patrick with me still. #BTSM |
| #BTSM chat @BTSMchat T2 // #BTSM -Patients/care partners: How did you make changes (if any) to your life plans post-diagnosis? -Clinicians: do you address life planning with your patients and at what point of a patient’s journey do you bring this topic up? |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @srajabi @BTSMchat Agree. Our baby was 5 months old when I was diagnosed, so we at least had her. I don't know how I'd feel if I did not have her. #btsm |
| Alireza Mansouri @DrAMansouri @ourbrainbank @BTSMchat can't imagine the strength needed to focus on these things while being confronted with a diagnosis of a brain tumor. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1c: Work: have an honest convo w/ your dr. What are your job responsibilities on paper? In real life? Talk through it w/ your team. #FMLA #SSI #SSDI #btsm @BTSMchat |
| #BTSM chat @BTSMchat RT @ourbrainbank: @BTSMchat T1 Immediate writing of will, identifying guardians for kids, endless work on LTD and benefits, actually felt good to get these all sorted so could then focus on tackling disease #BTSM |
| Jeremy Pivor @JeremyPivor @BTSMchat T2: I had to rein in my plans and consider what was possible in the moment and future. Today, what I can do is constrained by my indefinite treatment schedule (every 3 weeks), being close to a hospital, being fatigued, and the uncertainty of my mortality. #BTSM |
| Lisa O'Leary @lisaoleary524 T2 We never got to recalibrate after dx. Patrick's illness was swift and brutal, and he died only 10 mos after his first seizure. Recalibrating only started during my grief process, and continues today, several years later. #btsm |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: T2 // #BTSM -Patients/care partners: How did you make changes (if any) to your life plans post-diagnosis? -Clinicians: do you address life planning with your patients and at what point of a patient’s journey do you bring this topic up? |
| Alireza Mansouri @DrAMansouri Great source of evidence as usual @AshleySumrallMD ! thank you! #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1c: Work decisions: what are your deficits now? Motor deficits: Get a PT eval to objectively describe them. And/or get an OT eval. This can help to describe your new issues (even if subtle) on paper. #btsm @BTSMchat |
| Toph @IamTheToph @BTSMchat T2: When we made plans that would be just after an MRI, my wife and I would just know it was written in pencil, because everything could change. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @Marillenbluete Sending you some extra love. It's not easy seeing others moving on, living their life, and feeling "stuck" oneself. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T1c: Work: Do you have cognitive deficits? This can be tough to admit (& to identify). Consider a neuropsychologist for cognitive testing. This is an objective way to describe your new struggles on paper. It allows your team to monitor progress (by retest) & protects you. #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T2: Intially I felt like I sped things up- I always wanted to live in Denver so moved there within a year of diagnosis- now I feel like I’m holding things off. Want to have everything be just right and to have meaning so none of my time is wasted (for better or worse) #BTSM |
| Lisa O'Leary @lisaoleary524 @Marillenbluete This is such a good point. I moved to a small area about two years ago and I always think that if I were to be dx'd with any type of cancer, I'd likely need to move to have better access to good care. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @ourbrainbank @BTSMchat This! Although my husband took care of most of the "paperwork"/insurance stuff. #btsm |
| Alireza Mansouri @DrAMansouri @BTSMchat T1c: As surgeon, some times the situation happens too quickly for us too. We need better mechanism or strategy to initiate the discussion at the early stages. #BTSM |
| Jeremy Pivor @JeremyPivor @srajabi @BTSMchat I also struggle with fear-based thinking, but I think that is only human. If I get into that hole I try to remind myself of my values so I can as you say "make every choice in a deliberate way." I also reach out for help to get out of that fear trench. #BTSM |
| Debi Cirasole @DebiCasserole @BTSMchat T1: With my diagnosis I lost my independence, which carried with it my pride and identity. I could no longer drive. I began missing work. My job security came into question. The beginning was terrible. #btsm |
| Emily McIntosh @mcintose @BTSMchat T2. Career & family plans. I have begun applying for jobs in health care rather than only science since I now have the pt, advocate, care giver, and researcher background. I also will think twice before contemplating kids since it is a much harder decision now. #BTSM |
| Alireza Mansouri @DrAMansouri @BTSMchat sorry, meant T2c #BTSM |
| Jeremy Pivor @JeremyPivor Love this: "Live out in the open. To take risks." Thanks @adamhayden |
| Lisa O'Leary @lisaoleary524 @srajabi Thank you, my friend. Recalibrating after he died first meant therapy and just getting by day to day. Took a few years before I uprooted my life completely, quit my job, moved to a new area...because I am a different person than I was before his dx and death. #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat T1 diagnosis of serious/terminal disease like #GBM makes many reassess their relationship w partner. So many people have told me it's tested their relationship. Can be deal beakter or maker. In my case, fantastic maker of r/ship that was always good, now even better! #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat Insurance: private, mcare, mcaid, cobra, ssdi? 🤷🏻♀️ If you have issues and/or anticipate an insurance change, go ahead and talk to your dr, social worker, & financial counselor! #btsm @BTSMchat |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2c: Insurance/ Income: SSDI. Check https://t.co/zxBX4vVneQ for fast track illnesses such as #gbm #astrocytoma #leptomeningeal dz. https://t.co/3Ob38LGCqD #btsm @BTSMchat |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @AshleySumrallMD @BTSMchat My tumor grew while I was pregnant :-( We decided to not risk another pregnancy that could lead to potential new tumor growth. Luckily, we have a healthy almost 6 yo! <3 #BTSM |
| #BTSM chat @BTSMchat If you are here tonight to just listen, please tweet “#BTSM” so we know you’re in the audience! |
 | Alex Kalogeropoulos @AkalStation @BTSMchat Wife had plans to pay of her student loans in an accelerated fashion, upon diagnosis it didn’t make sense to rush to pay them off quickly when there was such an uncertainty around the future and if it would even make sense/be worth it to pay them off quicker. #btsm |
| OurBrainBank @ourbrainbank RT @BTSMchat: T2 // #BTSM -Patients/care partners: How did you make changes (if any) to your life plans post-diagnosis? -Clinicians: do you address life planning with your patients and at what point of a patient’s journey do you bring this topic up? |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat Losing ability to drive affects everything! If lost due to sz... Rules for sz vary by state but most are 6 mos w/o sz. There are MANY other reasons why we restrict driving: vision loss, fatigue, cognitive changes, etc. Be safe! #btsm @BTSMchat |
| Sean Sachdev, MD @SeanSachdevMD @DrAMansouri @BTSMchat Surgery could be urgent, chemo/RT not always. If interested in fertility preservation *ask* - don't assume there's no time for it. Ideally should always be discussed. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2c: Driving: many areas have transportation programs through @Uber @lyft or local @AmericanCancer. Also try a @SignUpGenius to allow drivers to pick spots (handy w radiation) #btsm @BTSMchat |
 | RaeLynne @TheRaeLynne #BTSM joining late but "listening" in |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @AshleySumrallMD @BTSMchat @Tsarmstrong01 @MRGneuroonc @MDABrainSpine @J_deGrootMD I wonder if there were any studies done in the past 5 years? If you come across anything, please tag me! #btsm |
 | Victoria @V_BBurns @BTSMchat T1: I was dx’ed the summer after graduating HS. I had my craniotomy two weeks before i was supposed to start college and move into my first dorm. I had to drop out before even starting. Ended up going to a college (my alum) closer to home. Plans changed... #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat T2 many people, inc. me, changed personal health - nutrition, exercise, supplements, mindfulness. Bad health news = for many a way to stimulate healthier lifestyles, also way to feel more in control #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @lisaoleary524 @AshleySumrallMD @BTSMchat This makes me so sad. Sending you a big hug, Lisa! #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2c. Goals! Please take time to set nonmedical goals! What truly matters to you? Do you need family close? Do you want to write a book? Run a marathon? Volunteer? Change careers? I have seen pts w brain cancer do all of these!! #btsm @BTSMchat https://t.co/N9EnHL1bRM |
| Lisa O'Leary @lisaoleary524 @Sabine_NJ @AshleySumrallMD @BTSMchat Thank you, Sabine - I'm receiving it gladly <3 #BTSM |
| Jeremy Pivor @JeremyPivor @AshleySumrallMD @BTSMchat It's pretty crazy how much it differs by state. In Massachusetts I can't drive for 6 months post-seizure, but in California they distinguish the type of seizure (i.e. I can still drive b/c I never lost consciousness and have only focal seizures.) #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2// what changes did I make to life? I just started, like, living life despite things not going the way I would’ve hoped or planned. I used to think I wasn’t good enough or smart enough or worthy enough— & now? I just want to leave a mark. Make a difference. Matter. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @DrAMansouri @ourbrainbank @BTSMchat And that's why it's important to have it in place when you are healthy. I keep advocating for it within my family/ circle of friends! #btsm |
| Emily McIntosh @mcintose @AshleySumrallMD @BTSMchat @Tsarmstrong01 @MRGneuroonc @MDABrainSpine @J_deGrootMD @AshleySumrallMD you are such a gift to #BTSM. Thank you for your insights and your links to evidence based guidance. I struggle to adequately express my gratitude to you! |
| Alireza Mansouri @DrAMansouri RT @SeanSachdevMD: @DrAMansouri @BTSMchat Surgery could be urgent, chemo/RT not always. If interested in fertility preservation *ask* - don't assume there's no time for it. Ideally should always be discussed. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T2 // #BTSM -Patients/care partners: How did you make changes (if any) to your life plans post-diagnosis? -Clinicians: do you address life planning with your patients and at what point of a patient’s journey do you bring this topic up? |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2c: I slowly intro idea of legacy. How do you want to be remembered? Plan ahead to leave a legacy. Books, journals, video. Esp if you have small children... https://t.co/Q8fvHKjZsC there are great books for grandparents, too. https://t.co/J2UpX7LZVU #btsm @BTSMchat https://t.co/b97XexdTny |
 | Chloe Drew @ChloeDrew8 @BTSMchat I'm here. Chloe from Perth, Australia! #BTSM |
| Jeremy Pivor @JeremyPivor RT @AshleySumrallMD: @BTSMchat T2c. Goals! Please take time to set nonmedical goals! What truly matters to you? Do you need family close? Do you want to write a book? Run a marathon? Volunteer? Change careers? I have seen pts w brain cancer do all of these!! #btsm @BTSMchat https://t.co/N9EnHL1bRM |
| #BTSM chat @BTSMchat Topic T3 is coming up… #BTSM |
| #BTSM chat @BTSMchat We all do, @mcintose! @AshleySumrallMD is an invaluable resource to the #BTSM community, as are all of you who share your experience with us. |
| OurBrainBank @ourbrainbank @BTSMchat T2 live more now, less thought of future, and think 'what now' not 'what if' #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T2. Totes made changes to life plans after dx. 1. I started new job 1 week before dx. Lost job because: brain surgeries. 2. After I was OK'd to work I had to find a new job. 3. Returning to work-world, I was inspired to do something more "meaningful" than before. #btsm |
| Jeremy Pivor @JeremyPivor 🙋♂️#tryingtowriteabook (but first finish my masters thesis!) |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T2c: start early if speech, language are affected. I ❤️ this tool for prompting stories: @StoryCorps... or just videos! Sharing memories can be so meaningful and helps others “left behind” through grief. #btsm @BTSMchat |
| Lisa O'Leary @lisaoleary524 @srajabi It is. Don't forget a lot of us have been there, and I know I personally am always here if you need any support. #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T2: I stopped working (for money - lol). Quitting my career was the biggest/most difficult/most impactful decision I ever made in my life. It topped moving cross continents and starting a family. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @AshleySumrallMD @BTSMchat T2c- @AshleySumrallMD— legit doing all of this (except swap marathon with powerlifting). Why not, you know? Why on earth not? I have a time bomb in my noggin, but I don’t know how many tick-tocks left— so I just have to do all the things faster. And enjoy the nothings. #BTSM |
| Emily McIntosh @mcintose @adamhayden @BTSMchat I likely wouldn't still be alive without my critical thought & ability to access & understand science. It made me think about ppl at socioeconomic and educational disadvantages a LOT - so now I want to help with KT to improve healthcare & outcomes for those individuals #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat T2 use my smarts from 30+ years of campaigning to create @ourbrainbank - only good can come from it, opposite of #GBM. Unleashing personal and collective power of patients, born from experience of living w #GBM #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @DrAMansouri: Great source of evidence as usual @AshleySumrallMD ! thank you! #BTSM |
| Lisa O'Leary @lisaoleary524 @ChloeDrew8 @BTSMchat Hi, Chloe!! #btsm |
| #BTSM chat @BTSMchat T3 // #BTSM -Patients/Care partners: Do you make plans based on a present-oriented or future-oriented mindset (or both)? Why? What does this look like for you? -Clinicians: what do you suggest people should base their decision-making on for life planning after diagnosis? |
 | Shirley Otis-Green @sotisgreen RT @TheLizArmy: Have ya’ll seen @adamhayden’s book review published in @sciencemagazine? 🤯 #btsm #medx #s4pm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @ourbrainbank: @BTSMchat T2 live more now, less thought of future, and think 'what now' not 'what if' #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @AshleySumrallMD @BTSMchat @StoryCorps "StoryCorps" = sounds like really great idea and application #btsm |
| Lisa O'Leary @lisaoleary524 T3 I have always been a "planner." After this experience, while I still see its value, I am no longer motivated by checking the boxes of traditional "success" and try to be as present as possible, knowing it could all change any time. #btsm |
| Jeremy Pivor @JeremyPivor @BTSMchat T3: I focus on the present because that is what I value most in my life -- my boyfriend, family, and friends. I continue to follow my passions that may lead to future-oriented milestones, but I trust if I follow my values day-to-day then in the future...I'll be content. #BTSM |
 | Joe Stefani @jstefani1347 We had to make plans for both present and future. Some items we said “later”, like estate plans, had to change to “now”. #BTSM |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: T3 // #BTSM -Patients/Care partners: Do you make plans based on a present-oriented or future-oriented mindset (or both)? Why? What does this look like for you? -Clinicians: what do you suggest people should base their decision-making on for life planning after diagnosis? |
| Alireza Mansouri @DrAMansouri RT @ourbrainbank: @BTSMchat T2 use my smarts from 30+ years of campaigning to create @ourbrainbank - only good can come from it, opposite of #GBM. Unleashing personal and collective power of patients, born from experience of living w #GBM #BTSM |
| Chloe Drew @ChloeDrew8 @lisaoleary524 @BTSMchat Hi Lisa! It's evening for you guys, but I'm tucking into my morning coffee on a fine spring day, and reading the good words of you fine people. Love to everyone and their families in the #BTSM world. You're all amazing for keeping on going despite the challenges. xox |
| OurBrainBank @ourbrainbank Cheers Adam! If u r affected by #GBM, check out our free, certified app. Use the code OBB100 to register. Track y9ur symptoms, manage your disease, and donate your data to scientists searching 4 answers #OBB10 |
| Lisa O'Leary @lisaoleary524 @ChloeDrew8 @BTSMchat SO glad you're here. It's nice to "hear" from you from the other side of the globe. :) #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: 1/3 ⭐️ soapbox moment— this is where individualized care is essential. Prognosis varies SO much based on location, extent of surgery, etc. I use this teaching tool I call “6 month plan” #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @lisaoleary524 @Marillenbluete Living in proximity to NYC/@sloan_kettering was the (only?!) reason my family accepted that we did not move back to Germany after my diagnosis (fyi: they ALL live there). #BTSM |
| Alex Kalogeropoulos @AkalStation @BTSMchat Right now we make plans on 3 month increments based my wife’s scan schedule of every 3 months #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T3: Along the way I realized life laughs at your plans brain tumor or not. I have a few goals/plans I hold dear that i tell myself “when I can when it’s time”. I planned my own death/funeral wishes- but I never know if that qualifies as planning for the now or the future #BTSM |
| Jeremy Pivor @JeremyPivor RT @mcintose: @adamhayden @BTSMchat I likely wouldn't still be alive without my critical thought & ability to access & understand science. It made me think about ppl at socioeconomic and educational disadvantages a LOT - so now I want to help with KT to improve healthcare & outcomes for those individuals #BTSM |
| Chloe Drew @ChloeDrew8 @BTSMchat I think you have make plans for both. Short term, medium term and (some) long term goals are important. And at some point, when appropriate, you have to live life and keep putting one foot in front of the other. Obviously, reducing or changing expectations can be hard. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: 2/3. First impressions matter, but relationships change as we get to know people... as we live with them. Brain tumors are that way. We learn quickly if they misbehave or act out, or if they are “better” than we expect. This means... #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @adamhayden @BTSMchat "Living out in the open" - YES! That was new for me too! But it comes with the territory of patient advocacy ;-) #btsm |
| OurBrainBank @ourbrainbank @BTSMchat T3 both - living life thro sharpened lens, trying to stretch the nanoseconds to increase happiness, but also use the insight given from the exp. of disease to make better ideas for longer term... for me, family, kids #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3// I make plans on fly. I say “yes” to everything, & now I’m learning how to say “no” (mainly because I’m only now figuring out my own path in world). I’m very present-oriented. Very RIGHT NOW. I try to mentally prepare myself for things afraid of: reoccurrence & decline. #BTSM |
| Emily McIntosh @mcintose @BTSMchat T3. I used to live my life in 3 month increments between scans. I now feel fortunate enough to be past that and don't consider my diagnosis a crazy amount when making plans apart from not moving too far away from the amazing health team I've curated #BTSM |
| Shirley Otis-Green @sotisgreen T1: We all need to increase our tolerance for ambiguity-but a diagnosis of a brain tumor definitely heightens our awareness of the uncertainties in life-#OncologySocialWorkers can help!#btsm @BTSMchat #hapc #swhpn @oncosocialwork @nasw |
| Jeremy Pivor @JeremyPivor @AkalStation @BTSMchat I similarly make plans based on my 9-week MRI schedule and use how I'm feeling at those checkpoints to assess whether or not I'm feeling good about my "plans." #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: 3/3. Assuming things are stable, give me about 6 months before I give you my “best guess” as to what will happen. This technique works best for gr 2-3, sometimes 4 gliomas. I also use 3 mo. #btsm |
| OurBrainBank @ourbrainbank @BTSMchat T3 there's a value in the patient experience that isn't fully tapped. Wld love more patients and clinicians and carers to work more collaboratively, around human design principles. Wld leave to smarter solutions #BTSM |
| Jeremy Pivor @JeremyPivor "see uncertainty as a space for possibility" Love that framing! #btsm |
| Alireza Mansouri @DrAMansouri @ourbrainbank @BTSMchat couldnt agree more! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @AshleySumrallMD @BTSMchat Completely forgot about that. Yes, 6 most of not driving was a big change. We hired a live-in nanny for my baby, and myself. #btsm |
| Jeremy Pivor @JeremyPivor RT @AshleySumrallMD: @BTSMchat T3: @BTSMchat T3: 1/3 ⭐️ soapbox moment— this is where individualized care is essential. Prognosis varies SO much based on location, extent of surgery, etc. I use this teaching tool I call “6 month plan” #btsm |
| KateWhy @KattyBatty1 @BTSMchat T3: Mixed—I give my son the Wayne’s World quote a lot “live in the now!” But also try to guide him into thinking more about his future plans after high school and being the primary caregiver for himself one day. #btsm |
| #BTSM chat @BTSMchat Thanks for all the participation! Keep the tweets coming. Topic T4 is coming up… #BTSM |
| SeleneSeltzer @SeleneSeltzer RT @ourbrainbank: @BTSMchat T3 there's a value in the patient experience that isn't fully tapped. Wld love more patients and clinicians and carers to work more collaboratively, around human design principles. Wld leave to smarter solutions #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T3: here’s the other thing... sometimes the tumor isn’t the issue. It’s the darn fatigue!! We often don’t know what the fatigue will be like until chemo and radiation have started ( or are completed). ((Sub nausea or sz or sensory issues for fatigue also)) #btsm |
| Lisa O'Leary @lisaoleary524 @MakesItFancy @BTSMchat I really relate to this. It's hard to be focused on today as a care partner and spouse with that awareness ever present. I wish I had done better at that, and hadn't pushed away some of the hard discussions because of my own fear of losing my husband. #BTSM |
| Shirley Otis-Green @sotisgreen Shirley Otis-Green here-a palliative and oncology social worker and passionate #btsm patient and care partner advocate @BTSMchat #hapc |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @ourbrainbank @BTSMchat This: "way to feel more in control"! - nutrition and exercise are some of the easiest/most common areas for patients to take part in their health journey/treatment plan. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T3. Been living w/astrocytoma for 11yrs. I used to make plans on a present-oriented mindset, looking at next 6mo to 2yrs. Today I allow myself to have a future-oriented mindset: I look at the next 2-4yrs of the work I love doing. Vacation is a priority. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @Lifeiskitsch @BTSMchat 😘😘 Be inspired! #btsm https://t.co/z0EEQpTPKC |
| Jeremy Pivor @JeremyPivor @AshleySumrallMD @BTSMchat Thank you for naming fatigue. I do experimental treatments every 3 weeks, and during that cycle I'm probably fatigued for about a week. Finding the balance between self-care and wanting to live my life regardless of the fatigue is a path I'm continuing to navigate #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @AshleySumrallMD @BTSMchat Check out @RecordMeNow - an app to leave a free legacy for loved ones! #btsm |
| #BTSM chat @BTSMchat @adamhayden is a perfect example that "well-being is possible within serious illness." If you didn't know that, well, now you do. #BTSM |
| #BTSM chat @BTSMchat T4 // #BTSM -Patients/Care partners: What advice do you have for other patients/care partners on how to plan and make decisions post diagnosis? -Clinicians: What resources and support can you offer for patients and their care partners? |
| #BTSM chat @BTSMchat RT @JeremyPivor: @AshleySumrallMD @BTSMchat Thank you for naming fatigue. I do experimental treatments every 3 weeks, and during that cycle I'm probably fatigued for about a week. Finding the balance between self-care and wanting to live my life regardless of the fatigue is a path I'm continuing to navigate #btsm |
| SeleneSeltzer @SeleneSeltzer RT @BTSMchat: T4 // #BTSM -Patients/Care partners: What advice do you have for other patients/care partners on how to plan and make decisions post diagnosis? -Clinicians: What resources and support can you offer for patients and their care partners? |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD RT @Sabine_NJ: @AshleySumrallMD @BTSMchat Check out @RecordMeNow - an app to leave a free legacy for loved ones! #btsm |
| Lisa O'Leary @lisaoleary524 T4 If possible, get all financial and other non-sexy stuff in order. We waited too long. It was hard for Patrick to articulate his needs, and it ended up disastrous with his family after he was gone. BEING PREPARED DOES NOT MEAN YOU'RE GIVING UP. I wish I had known that. #btsm |
| Jeremy Pivor @JeremyPivor @BTSMchat T4: No single plan is best for everyone. The best path forward is what is best for you. It may be based on logistical constraints, your values, or a mixture of constantly shifting variables. What's best is to not let the pressure of "planning" prevent you from living! #BTSM |
 | FLSA Today @FlsaToday RT @AshleySumrallMD: @BTSMchat T1c: Work: @BTSMchat T1c: Work: have an honest convo w/ your dr. What are your job responsibilities on paper? In real life? Talk through it w/ your team. #FMLA #SSI #SSDI #btsm @BTSMchat |
| Alireza Mansouri @DrAMansouri @BTSMchat @abta: https://t.co/fsedu6TSym @FightBrainTumor https://t.co/CgAgk421M4 #btsm |
| OurBrainBank @ourbrainbank @BTSMchat T4 check out the community - there's a wealth of wisdom and support just a click away. @OurBrainBank monthly Voices zoom chats have patients and carers sharing advice, from emotional to professional, in non judgemental setting #BTSM |
| Lisa O'Leary @lisaoleary524 @AshleySumrallMD I sure learned that one the hard way. I hope that negative experience can help other people avoid it. #BTSM |
| Joe Stefani @jstefani1347 @lisaoleary524 So true! We had a TON to finish up as we started this stuff before my partners diagnosis #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy @BTSMchat I like the "meaningful" part. It was the one thing that helped me be OK with the fact that my career was over. I remember asking @ImermanAngels for guidance on that topic back in 2014 - and got paired with YOU! Best mentor ever! #btsm |
| Alireza Mansouri @DrAMansouri RT @ourbrainbank: @BTSMchat T4 check out the community - there's a wealth of wisdom and support just a click away. @OurBrainBank monthly Voices zoom chats have patients and carers sharing advice, from emotional to professional, in non judgemental setting #BTSM |
| #BTSM chat @BTSMchat Mark your calendars for next #BTSM chat: Sunday, November 3rd, at 6pm PT/9pm ET. |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: Love fiercely. Laugh. Travel. Eat. Give yourself room... to grieve your diagnosis, to grieve loss, to FEEL. Give yourself & your family/ loved ones heapings of grace. #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: 1/2 Travel: with cognitive, visual, sensory disabilities, you still can. (We travel w our daughter who is disabled so I love this topic) Look up the airline or cruise policy. Call them. Read disability travel blogs. Plan ahead! #btsm For wheelchairs... |
| Mariah Jae @MariahJaeee @BTSMchat T4: Always prepare for plans to change. Decide for yourself what you are unwilling to give up on and don’t be hard on yourself if that changes. Don’t exclusively make plans based on stats or prognosis- it’s not wrong or against the rules to plan for best case scenario too #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat T4 can be tough but communication is almost always key. Being able to express how you're feeling, share your worries, connect to others who can listen and help you make the choices that r right for u. Don't be afraid to seek 2,3 or more opinions. Don't be afraid to q. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T4// I like to flamboyantly actress the role I’d play: I would tell you, regardless of grading or type, to not treat diagnosis as a death sentence— because we can’t really choose diagnosis— but we can try our very best to choose how we embrace each moment still alive-ing. #BTSM |
 | Ishwaria Subbiah, MD MS FASCO @IshwariaMD @BTSMchat T4: woefully late to the #btsm party tonight but will throw in my $0.02. Reset expectations of yourself when you’re going through treatment. You may have done task X your entire life but it’s ok to get help w it now. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T3 // #BTSM -Patients/Care partners: Do you make plans based on a present-oriented or future-oriented mindset (or both)? Why? What does this look like for you? -Clinicians: what do you suggest people should base their decision-making on for life planning after diagnosis? |
| Shirley Otis-Green @sotisgreen RT @lisaoleary524: T4 If possible, get all financial and other non-sexy stuff in order. We waited too long. It was hard for Patrick to articulate his needs, and it ended up disastrous with his family after he was gone. BEING PREPARED DOES NOT MEAN YOU'RE GIVING UP. I wish I had known that. #btsm |
| RaeLynne @TheRaeLynne @ourbrainbank @BTSMchat SO important - caretaking / caregiving was tough, and wish I'd known more about this type of community support during my late husband's illness, instead of after. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch RT @MariahJaeee: @BTSMchat T4: @BTSMchat T4: Always prepare for plans to change. Decide for yourself what you are unwilling to give up on and don’t be hard on yourself if that changes. Don’t exclusively make plans based on stats or prognosis- it’s not wrong or against the rules to plan for best case scenario too #BTSM |
| Joe Stefani @jstefani1347 Getting multiple opinions. I have family members in the field and we get their input but also from we my partner had his surgery in addition to where he gets treatment now. #BTSM |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: 2/2. Find a beach w beach w/c. Read blogs like https://t.co/hWJ2KLnPWa. Try assisted skiing. Take a cruise! Call & ask questions. #btsm |
| Michael Ivan, MD, MBS, FAANS @michaelivanmd @BTSMchat T4 This is key. Not only do we need to focus on supporting our patients but also their care partners & their families. Each one needs slightly different support. Offering guidance to local support groups,grateful patients who want to help &social media groups like @BTSMchat #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T4. My advice to others planning w/an uncertain future right after dx: Don't force yourself into living the way you used to. Don't be pressured to have a 5yr plan. Give yourself a break from saving for retirement. Live in the short-term. If 🍀then think ahead. #btsm |
| SeleneSeltzer @SeleneSeltzer RT @AshleySumrallMD: @BTSMchat T2c. Goals! Please take time to set nonmedical goals! What truly matters to you? Do you need family close? Do you want to write a book? Run a marathon? Volunteer? Change careers? I have seen pts w brain cancer do all of these!! #btsm @BTSMchat https://t.co/N9EnHL1bRM |
| #BTSM chat @BTSMchat "The best path forward is what is best for you." Amen, @JeremyPivor! #BTSM |
| Joe Stefani @jstefani1347 @michaelivanmd @BTSMchat Very true #btsm |
| Michael Ivan, MD, MBS, FAANS @michaelivanmd RT @BTSMchat: "The best path forward is what is best for you." Amen, @JeremyPivor! #BTSM |
| Sean Sachdev, MD @SeanSachdevMD @AshleySumrallMD @BTSMchat Travel insurance = good idea. Let your medical team help if they deny/ignore. We had to advocate, write a letter once to get the travel insurance company to perk up and pay attention #btsm |
| #BTSM chat @BTSMchat RT @michaelivanmd: @BTSMchat T4 This is key. Not only do we need to focus on supporting our patients but also their care partners & their families. Each one needs slightly different support. Offering guidance to local support groups,grateful patients who want to help &social media groups like @BTSMchat #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: Also, plan ahead for an office visit. Tell your dr... next time can we block off extra time to discuss my goals/ life planning/ hard stuff?? Notice I said “tell” not ask. Be your own advocate!! #btsm |
| Ishwaria Subbiah, MD MS FASCO @IshwariaMD @BTSMchat T4: translate that goodwill from your community to meaningful support. ie get task lists going (signup genius or any other apps) to get friends, family, church, neighbors to help w errands, sitting/being w the patient (while caregiver takes a break), pickups/drop offs, etc. #btsm |
| Lisa O'Leary @lisaoleary524 @TheRaeLynne @ourbrainbank @BTSMchat Me too, my friend! I think often how different it might have been if I had known about #BTSM and had the support of such an amazing community. #BTSM |
| Emily McIntosh @mcintose @BTSMchat T4. I think it's important to consider who you are & what is most important to you. You are an individual, not a diagnosis. I think quality >> quantity of life so prioritize things to help make your decisions & use evidence to guide these choices & get a great health team! #BTSM |
| #BTSM chat @BTSMchat Looking for more support? Join the @NBTStweets Brain Tumor Support Conversations virtual support group on Sunday, October 20th, 4pm PT/7pm ET, facilitated by @adamhayden & @lisaoleary524. #BTSM |
| #BTSM chat @BTSMchat Patients, care partners, any brain tumor type, any stage of treatment can join! Learn more at https://t.co/N4rfQU7Oym #BTSM https://t.co/hH1VCNamZ9 |
| St_Molly_AgentofChaos @Lifeiskitsch RT @TheLizArmy: @BTSMchat T4. My advice to others planning w/an uncertain future right after dx: @BTSMchat T4. My advice to others planning w/an uncertain future right after dx: Don't force yourself into living the way you used to. Don't be pressured to have a 5yr plan. Give yourself a break from saving for retirement. Live in the short-term. If 🍀then think ahead. #btsm |
| Joe Stefani @jstefani1347 @AshleySumrallMD @BTSMchat Do you find a lot of your patients doing that? #btsm |
| OurBrainBank @ourbrainbank @IshwariaMD @BTSMchat T4 Great point! My community rallied round and delivered dinners for two months after diagnosis, and took care of kids, showered us with love. Amazing. #BTSM |
| Lisa O'Leary @lisaoleary524 RT @BTSMchat: Patients, care partners, any brain tumor type, any stage of treatment can join! Learn more at https://t.co/N4rfQU7Oym #BTSM https://t.co/hH1VCNamZ9 |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T3: Both - I'm a planner, and used to have a hard time living in the moment. I am more intentional now, living in the here and now. I was scared to plan after dx, but the longer I'm out from that, the more I plan for the future. Mostly surrounding travels plans... #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: T4 // #BTSM -Patients/Care partners: What advice do you have for other patients/care partners on how to plan and make decisions post diagnosis? -Clinicians: What resources and support can you offer for patients and their care partners? |
| OurBrainBank @ourbrainbank RT @BTSMchat: Patients, care partners, any brain tumor type, any stage of treatment can join! Learn more at https://t.co/N4rfQU7Oym #BTSM https://t.co/hH1VCNamZ9 |
| St_Molly_AgentofChaos @Lifeiskitsch RT @lisaoleary524: T4 If possible, get all financial and other non-sexy stuff in order. We waited too long. It was hard for Patrick to articulate his needs, and it ended up disastrous with his family after he was gone. BEING PREPARED DOES NOT MEAN YOU'RE GIVING UP. I wish I had known that. #btsm |
| Lisa O'Leary @lisaoleary524 @adamhayden and I would love to have as many of you join as possible! DM us with any questions. #BTSM |
| #BTSM chat @BTSMchat Thanks for joining us tonight. Tonight’s #BTSM chat moderators were @JeremyPivor & @lisaoleary524. #BTSM organizing team also includes @adamhayden @Sabine_NJ @CBlotner_ & @TheLizArmy. |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: I also love talking about faith with pts/ families. It can be so important to your journey. #btsm |
| SeleneSeltzer @SeleneSeltzer RT @AshleySumrallMD: @BTSMchat T4: @BTSMchat T4: Also, plan ahead for an office visit. Tell your dr... next time can we block off extra time to discuss my goals/ life planning/ hard stuff?? Notice I said “tell” not ask. Be your own advocate!! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Don't have anyone tell you what you SHOUD be doing. Listen to your body, then act accordingly. Don't let fear interfere with your plans. Want to go on that trip? Go! Want to eat that cake? Eat it! Life is short in the big picture anyway. #btsm |
| OurBrainBank @ourbrainbank @BTSMchat @JeremyPivor @lisaoleary524 @adamhayden @Sabine_NJ @CBlotner_ @TheLizArmy Thx for great chat! #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @lisaoleary524: T4 If possible, get all financial and other non-sexy stuff in order. We waited too long. It was hard for Patrick to articulate his needs, and it ended up disastrous with his family after he was gone. BEING PREPARED DOES NOT MEAN YOU'RE GIVING UP. I wish I had known that. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @BTSMchat: Patients, care partners, any brain tumor type, any stage of treatment can join! Learn more at https://t.co/N4rfQU7Oym #BTSM https://t.co/hH1VCNamZ9 |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @JeremyPivor: @BTSMchat T4: @BTSMchat T4: No single plan is best for everyone. The best path forward is what is best for you. It may be based on logistical constraints, your values, or a mixture of constantly shifting variables. What's best is to not let the pressure of "planning" prevent you from living! #BTSM |
| Lisa O'Leary @lisaoleary524 @Sabine_NJ @BTSMchat Just be careful with sheet cake... if you don't know what I'm referring to, ask me later! Hahaha... #BTSM |
| Ishwaria Subbiah, MD MS FASCO @IshwariaMD @BTSMchat T4: it’s common to have physical pain from cancer. It’s OK to take opioids for #cancer pain if it’s recommended by your doctor! PLEASE DO NOT PUT UP WITH & SUFFER FROM CANCER PAIN just bc of what you hear on the news. #btsm |
| SeleneSeltzer @SeleneSeltzer Thank you all for a great chat! #btsm |
| Emily McIntosh @mcintose @adamhayden @BTSMchat Well said @adamhayden ! #BTSM |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @IshwariaMD: @BTSMchat T4: @BTSMchat T4: woefully late to the #btsm party tonight but will throw in my $0.02. Reset expectations of yourself when you’re going through treatment. You may have done task X your entire life but it’s ok to get help w it now. #btsm |
| #BTSM chat @BTSMchat View the transcript of tonight's chat: https://t.co/0J2tWX3Mwx #BTSM |
| Alex Kalogeropoulos @AkalStation @lisaoleary524 @Sabine_NJ Could you elaborate on what you mean by this? Are you talking about a will? #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD @BTSMchat T4: last soapbox moment. Trust your team- they love you & have only your best interest at heart. Connect. My pts know what’s coming by my facial expressions or how I walk in a room. If you need to, you can always ask your dr... what am I not asking that I should? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat @JeremyPivor @lisaoleary524 @adamhayden @CBlotner_ @TheLizArmy Thanks, @JeremyPivor for leading us through the q's tonight and suggesting such an important topic! #btsm |
| #BTSM chat @BTSMchat Tonight's top influencers of the #BTSM chat are: @BTSMchat @AshleySumrallMD @ourbrainbank @adamhayden @lisaoleary524 @srajabi @JeremyPivor @Sabine_NJ @TheLizArmy @mcintose |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Tonight's top influencers of the #BTSM chat are: @BTSMchat @AshleySumrallMD @ourbrainbank @adamhayden @lisaoleary524 @srajabi @JeremyPivor @Sabine_NJ @TheLizArmy @mcintose |
 | Christina Lizaso @btrfly12 RT @lisaoleary524: T4 If possible, get all financial and other non-sexy stuff in order. We waited too long. It was hard for Patrick to articulate his needs, and it ended up disastrous with his family after he was gone. BEING PREPARED DOES NOT MEAN YOU'RE GIVING UP. I wish I had known that. #btsm |
| Joe Stefani @jstefani1347 @AshleySumrallMD @BTSMchat Great advice! #btsm |
| OurBrainBank @ourbrainbank RT @BTSMchat: Tonight's top influencers of the #BTSM chat are: @BTSMchat @AshleySumrallMD @ourbrainbank @adamhayden @lisaoleary524 @srajabi @JeremyPivor @Sabine_NJ @TheLizArmy @mcintose |
| #BTSM chat @BTSMchat #BTSM had over 419,000 impressions tonight! The Numbers 419.600K Impressions 298 Tweets 36 Participants 298 Avg Tweets/Hour 8 Avg Tweets/Participant |
| #BTSM chat @BTSMchat RT @AshleySumrallMD: @BTSMchat T4: @BTSMchat T4: last soapbox moment. Trust your team- they love you & have only your best interest at heart. Connect. My pts know what’s coming by my facial expressions or how I walk in a room. If you need to, you can always ask your dr... what am I not asking that I should? #btsm |
| Ashley Love Sumrall, MD, FACP, FASCO @AshleySumrallMD RT @BTSMchat: #BTSM had over 419,000 impressions tonight! The Numbers 419.600K Impressions 298 Tweets 36 Participants 298 Avg Tweets/Hour 8 Avg Tweets/Participant |
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