#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | NCI Cancer Stats @NCICancerStats Brain and other nervous system #cancer has a 33.2% 5-year relative survival rate. Find more statistics about this disease here: https://t.co/6gHC9uDCiR #BTSM https://t.co/Y8tc0G2dNg |
 | Charlie Blotner @CBlotner_ @BTSMchat Hi everyone - Charlie in Seattle here. 5+ years post awake cranio for grade II astro w/o recurrence, current MSW student. #btsm |
 | Lisa O'Leary @lisaoleary524 Hi all- Lisa here, GBM widow and BT advocate - just wanted to say hi, can’t stay tonight because the Warriors are playing and I’m not a good multitasker. Looking forward to reading the transcript! #btsm |
 | I CANcer @hawktober4bt @BTSMchat We're just here for the snacks. #btsm |
 | Beth E. Finn @Finnspiration @BTSMchat Hi team #btsm! I think I'll mostly be lurking tonight, but who knows? :) |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ Hi! I'm Sabine. 4 years into AA3. @theABTA advisory council member, @NBTSNewYork Why I walk campaign volunteer, and more things brain tumor-related ;-) #btsm |
 | Liz Salmi @TheLizArmy @BTSMchat Liz here! Living with grade 2 astrocytoma. But as I learned today from @ranjitbindra, I'd be better off identifying myself by tumor mutations as pathology alone is so 2015. So, IDH1! #btsm |
 | St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat Hey! I’m Molly! Grade 3 Anaplastic Astrocytoma patient at Henry Ford (@HenryFordNeuro) in Detroit. Diagnosed in October 2016. I love meeting people on this strange life path... writing w @Sabine_NJ & living with purpose. #BTSM |
| Liz Salmi @TheLizArmy @Finnspiration @BTSMchat Lurking?! You?! I don't know about that. #btsm |
 | Beth Kassab @BethKassab @BTSMchat Hi first time here #btsm My husband was diagnosed with Grade 3 AA in March. Had biopsy and then tumor partially resected. Starting Temodar/radiation. Hoping to just learn as much as we can to help him. |
| Liz Salmi @TheLizArmy @LisaJaayyy Woah! Sorry to hear about the possible recurrence. Where are you being seen in Chicago? I am here right now! #btsm |
| Liz Salmi @TheLizArmy @BTSMchat My research affiliations: @BIDMChealth @myopennotes @PCORI #btsm |
 | Matt Cotcher @MLCotcher Evenin’, y’all! Matt here. Brain stem ependymoma in 2007 with recurrence in ‘17. #btsm |
 | ✌🏼Peacemomma ✌🏽 @peacemomma67 @BTSMchat Hi #BTSM I’m brain tumor survivor from ‘06. Worked as a MSW in healthcare prior to my tumor/surgery. Welcome all. |
| Liz Salmi @TheLizArmy @BethKassab @BTSMchat Thanks for joining in, Beth! Sounds like you have a great plan laid out for your husband. Where are you guys from? #btsm |
| Charlie Blotner @CBlotner_ @BethKassab Welcome, Beth. Hoping that we can be of some help in this new caregiving season of life. #btsm |
| Beth E. Finn @Finnspiration @TheLizArmy @BTSMchat Yeah, me neither :D But I'm exhausted today! Like I said, we'll see! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch Heads up! It’s time for the @BTSMchat— so I’m going to be chirping about brain cancer even more than normal for the next hour! #braincancer #BTSM |
| Charlie Blotner @CBlotner_ @peacemomma67 No way! Hello, from one medical social worker to another. #btsm |
| Beth Kassab @BethKassab @TheLizArmy @BTSMchat Thank you! We live in Orlando. His surgery was at UF Shands in Gainesville. #btsm |
| Dmitri Furman @dmitrif Attending for the first time #btsm | |
| Charlie Blotner @CBlotner_ @LisaJaayyy Ack! I thought the scan you posted a photo after the other day was all stable? Next steps/plan of action? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Tonight’s chat will be organized by themes. Please tweet using T1, T2, etc to share and ask questions. #BTSM |
| Beth Kassab @BethKassab @CBlotner_ Thank you! Also since mutation IDs are all the rage in 2018, he's IDH1 and MGMT. So we think that's positive. Very diffuse tumor. #btsm |
| Liz Salmi @TheLizArmy @dmitrif Thanks for joining us! What brings you by? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Let’s jump in! T1 // Have you used a system or tool to track daily symptoms? If yes, describe. If no, why not? #BTSM |
| Charlie Blotner @CBlotner_ @LisaJaayyy Hmm. Do you know if you'd be able to do stereotactic biopsy, or if you'd have to go fully under for the whole-shebang-awake-cranio again? #btsm |
| Liz Salmi @TheLizArmy @BethKassab @CBlotner_ Yes, IDH1 and MGMT are signs of a "more favorable outcome" (to sound clinical). I just saw a great presentation on this today by @ranjitbindra. Give him a follow! #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat I do not (any more). I think I know my body well enough by now to not be worried by a headache or fatigue. If it's something new or if I feel funny about a symptom, I'd have it checked out. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T1: When I was 1st dx'd I used @patientslikeme website to track seizure activity. Eventually I noticed a pattern: I was having breakthrough seizures every day around 7pm... Roughly 12 hours after I had taken my morning pill. These drugs have a 12hr half life. Made sense. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T1 // My Hospital uses the MyChart app, so I don’t track symptoms on an app so much as constantly haranguing my nurses & doctors (but mainly the nurses) with my daily neuroses & symptoms— also I can never remember the names of my meds so that app helps a lot. #BTSM |
| Charlie Blotner @CBlotner_ Reminder to all participating in @BTSMchat tonight to periodically search and refresh #btsm via Twitter's main platform even if you're using https://t.co/aKtOsZ3rMg, as not all tweets appear in the stream, unfortunately. |
| Beth Kassab @BethKassab @TheLizArmy @CBlotner_ @ranjitbindra Just followed him! #btsm thanks for the recommendation. |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BethKassab @CBlotner_ @ranjitbindra Now I’m sad I don’t have the MGMT thing. Just the IDH1, I think. I think. 🤔 #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat I also use the MyChart app, which is the mobile platform for access to my patient portal at @UCDavisHealth and @UCSFCancer. The website version of MyChart is more robust, but the mobile app is convenient. #btsm |
| Matt Cotcher @MLCotcher T1: I don’t track symptoms daily. Doing so was giving my “brokenness” more mind space, so I stopped about 2 years after surgery. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat A1. I used to track seizures via a simple excel sheet. Then switched to my phone for convenience sake. Now both. /1 #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat A1. I never found an app I really liked, though I'm certainly open to suggestions. I also like the simplicity of a simple log/chart. /2 #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BethKassab @CBlotner_ @ranjitbindra You might have it! You might have other biomarkers as well. While our diagnoses are listed in MyChart (patient portal), our biomarkers are not. 😕 Limited. #btsm |
| Beth E. Finn @Finnspiration @BTSMchat T1 // Never really had any symptoms other than 2 strange headaches, so never tracked. I used to use a little pocket calendar to track things related to migraine, and I think that helped me identify the 2 weird headaches. (@TheLizArmy was right... couldn't stay quiet! :D ) #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BTSMchat @UCDavisHealth @UCSFCancer I can’t remember my password to log in online... so I just use my fingerprint on app. 🤦♀️ #typicalme #btsm |
 | Kathy @kschrock997 #BTSM |
 | Alex Zafirovski @AlexZafirovski RT @TheLizArmy: Really had an interesting conversation today with @sean_sachdev, #radonc at @LurieCancer. Learned so much about targeted brain radiation. I left our hour-long conversation convinced that radiation oncology is truly an artform. #ASCO18 #btsm https://t.co/Zkd5aaDG1r |
| Beth Kassab @BethKassab @TheLizArmy @Lifeiskitsch @CBlotner_ @ranjitbindra Yes, it's my understanding that many IDH1 also have MGMT. #btsm So strong possibility. As someone new to this, we've found our doctors focus more on mutated status than anything else. Makes a lot of sense, though, based on what I've read. |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BethKassab @CBlotner_ @ranjitbindra I think @JimSnyderDO or Nurse Francine gave me a sheet with all the “stuff” on it when I came into office to get talked off the ledge of despair after phone call diagnosis... but it’s in a pile in the basement. #btsm 🤪🤯💃 |
| Charlie Blotner @CBlotner_ @Lifeiskitsch @TheLizArmy @BethKassab @ranjitbindra @JimSnyderDO A1 curious side comment - Do people prefer digital to paper for tracking symptoms? #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T2: We patients only get a few hours in "health care" each year, but we spend over 5,000 waking hours in self care. It's worth it to be tracking our own symptoms and be able to accurately report back to our doctors. #btsm (h/t @SaraRiggare regarding time spent in self care) |
| Beth E. Finn @Finnspiration @BTSMchat @Lifeiskitsch @TheLizArmy @UCDavisHealth @UCSFCancer @BTSM Thanks! I knew I was too tired for this tonight :) #btsm |
| Beth Kassab @BethKassab @BTSMchat T2 // my husband had a seizure out of the blue. That led to MRI and tumor discovery. From there, he started tracking symptoms and concerns in OneNote. We found it good to not forget anything at dr appts. #btsm |
 | Lynne P. Taylor, M.D. @neulpt Listening #btsm |
| Liz Salmi @TheLizArmy @CBlotner_ @Lifeiskitsch @BethKassab @ranjitbindra @JimSnyderDO Uh, digital tracking please! #btsm |
 | Jess G-B @JAGRacer1875 @BTSMchat ##BTSM |
 | Rosalind Greene🇺🇸 @rosagreene2020 @BethKassab @BTSMchat Beth, helping him by taken on the responsibility of learning as much as possible is over half the battle to recovery. Knowledge is the most powerful tool when dealing with any illness. I think getting involved into groups help increase knowledge base and most of all support.#btsm |
 | Mariah Jae @MariahJaeee @BTSMchat No, I used to track my headaches but other symptoms always seem to happen when I have too many things going on to write them down/remember to later #btsm |
| Liz Salmi @TheLizArmy @JAGRacer1875 @BTSMchat Thanks for stopping by! Jump in any time. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2 // I would feel “safer” because it seems logical that tracking changes ultimately can lead to you know, “hey, that’s getting wonky. We might want to push that MRI up a month or two.” I mean, seems logical. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat T2: As a patient, I find it helpful to take notes of my symptoms so I could discuss them with my health care team during my appointment. I usually divide them into questions for nurse and questions for NO. #btsm |
| Beth E. Finn @Finnspiration @CBlotner_ @Lifeiskitsch @TheLizArmy @BethKassab @ranjitbindra @JimSnyderDO Now, I think I'd prefer digital on my phone. It's always with me. But it's also got to be easy & intuitive. #btsm |
| Beth Kassab @BethKassab @TheLizArmy @CBlotner_ @Lifeiskitsch @ranjitbindra @JimSnyderDO Definitely digital. Though we have printed out copies for some doctors who prefer that. #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BethKassab @CBlotner_ @ranjitbindra @JimSnyderDO You were given your diagnosis over the phone? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @CBlotner_ @TheLizArmy @BethKassab @ranjitbindra @JimSnyderDO Digital. F paperwork that starts out in folders but moves into piles & eventually the shredder when I stop caring... #btsm |
 | Claire Snyman @clairehsnyman Claire here, going to catch up tomorrow as this is an excellent topic - but brain needs attention right now - busy weekend 💗 #btsm |
| Charlie Blotner @CBlotner_ @adamhayden @TheLizArmy I've found it important to take breaks to avoid empathy burnout re: unpaid asks, and more selective for paid. #btsm |
| Rosalind Greene🇺🇸 @rosagreene2020 RT @Lifeiskitsch: @BTSMchat T1 // My Hospital uses the MyChart app, so I don’t track symptoms on an app so much as constantly haranguing my nurses & doctors (but mainly the nurses) with my daily neuroses & symptoms— also I can never remember the names of my meds so that app helps a lot. #BTSM |
| Matt Cotcher @MLCotcher @adamhayden @TheLizArmy @BTSMchat @SaraRiggare More importantly, how to distinguish between “life” and self care. #btsm |
| Liz Salmi @TheLizArmy @CBlotner_ @adamhayden I don't think @adamhayden was talking about the "work" of a patient advocate. More like the work it takes to be an engaged patient, if one so chooses. Not everyone wants to work at it! It is our right to say, "Tell me what to do doc." #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BethKassab @CBlotner_ @ranjitbindra @JimSnyderDO But there was a very loooong meeting immediately following that phone call. #btsm |
 | OurBrainBank @ourbrainbank Common track: sleep, headache, fatigue. Check out @ourbrainbank on the App Store and Google Play. Or go to our website https://t.co/pWvW42nbkw #btsm https://t.co/0zZAfJvfTI |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @BTSMchat Not at all. What is difficult is that the fellow assistant change every year. They don't know me as well as my NO. #btsm |
 | Fabio Schutz @FabioSchutz78 RT @TheLizArmy: 2008: 2008: Astrocytoma diagnosis. 2018: Invited speaker at @ASCO. A lot can happen in 10 years. I had no idea a graphic designer could have a role to play in the future of cancer care. Reality is, patients are a BIG PART of the care team. #ASCO18 #MedX #btsm https://t.co/UVngBE79m3 |
| Charlie Blotner @CBlotner_ @Lifeiskitsch @TheLizArmy @BethKassab @ranjitbindra @JimSnyderDO I find myself having lots of organized files on my laptop, or notes on my phone. I definitely keep better track of things that way than on stray pieces of paper. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @CBlotner_ @TheLizArmy @BethKassab @ranjitbindra @JimSnyderDO Same. #btsm |
| Beth Kassab @BethKassab @CBlotner_ @Lifeiskitsch @TheLizArmy @ranjitbindra @JimSnyderDO We did start a 3-ring binder with path reports, hospital stuff etc. Plus this disease seems to require the lugging of many disks with MRI images on them. We have found hospital systems don't have a quick and easy way to share those. #btsm |
| Rosalind Greene🇺🇸 @rosagreene2020 @Lifeiskitsch @BTSMchat As the saying goes...early detection is the best path to cure and or prevent spreading. #BTSM |
 | Erica Robinson @eleighrobs @BTSMchat Sorry I am late! Hi! I am listening...#BTSM |
| Charlie Blotner @CBlotner_ @TheLizArmy @adamhayden Ahhh. It definitely takes a lot of work to do the research, stay up to date on information, and have conversations. I would imagine that the conversations Liz was having at #ASCO18 today were fascinating, and exhausting on a multitude of levels. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3// I use the MyChart app. But mainly I use Nurse Francine on the MyChart app & if she’s on vacation, one of the other folks will respond. And if I’m having a panic, I’ll just text one. I don’t like doing that unless I’m legit scared. Which as a hypochondriac... happens. #btsm |
| Erica Robinson @eleighrobs @BTSMchat Bad Erica. I am late, but listening! #BTSM |
| Liz Salmi @TheLizArmy @BTSMchat T3: Health apps I am using RN include: MyChart (portal with health systems) GoodRX to look up prescription drug prices Epocrates to look up drug interactions Fitbit to track activity Walgreens to call in my prescriptions, yo And Nerve Whiz, because science #btsm |
| Lynne P. Taylor, M.D. @neulpt #btsm. Graph white count, platelet count and weight in Epic. Print out the graph and share together for trends T3 |
 | Kendra K @KMJtravels Sorry to join late #btsm friends - just landed in LA to start @cityofhope #CarT #Glioblastoma #clinicaltrial tomorrow 🤞🧠🎉 |
| Beth E. Finn @Finnspiration @BTSMchat T3: When I was diagnosed, there weren't any apps for that sort of thing. But my mom was (is) the queen of organization and had a huge notebook with all the questions we asked and answers we got from all the docs we saw. Thank G-d for moms! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3– aside// btw, I was a bit of a minor hypochondriac my whole life but never EVER suspected brain cancer. How’s that for wacko? 😆 #btsm |
| Lynne P. Taylor, M.D. @neulpt #BTSM. To be clear, the sharing is between myself, patient and family in the visit, and part of the after visit summary or AVS. T3 |
| Charlie Blotner @CBlotner_ @KMJtravels @cityofhope So excited you're able to do it! I remember us talking about it at our Seattle #btsm meet up! 🧠☕️ |
| Liz Salmi @TheLizArmy @Lifeiskitsch @BTSMchat Molly: You often tweet about your anxieties about your symptoms, but you are also self aware that sometimes the anxiety could be "nothing." How often have your worries materialized into actual "issues?" That would be an interesting thing to track! #btsm |
| Charlie Blotner @CBlotner_ Helpful health apps, from one nerd to another 🤓🧠👍. #btsm #hcsm https://t.co/8xHCIZ6neY |
| Matt Cotcher @MLCotcher T3: I use MyChart a lot but only because it’s proven itself to be a reliable way to communicate with my team. I’d be open to using anything that provides additional access to doctors, nurses, etc. #btsm |
 | Carolyn Petersen @SurvivorshipIT RT @TheLizArmy: @BTSMchat T2: @BTSMchat T2: We patients only get a few hours in "health care" each year, but we spend over 5,000 waking hours in self care. It's worth it to be tracking our own symptoms and be able to accurately report back to our doctors. #btsm (h/t @SaraRiggare regarding time spent in self care) |
| Lynne P. Taylor, M.D. @neulpt Yes, presuming this was during active chemotherapy, it should be proof that your body is tolerating the drugs well and gives info about bone marrow reserves for later decisions. #Btsm T3 https://t.co/l9IVgUe3A2 |
| Liz Salmi @TheLizArmy @neulpt The platelet graph was always my favorite in Epic/MyChart. Here's a throwback to my platelets in 2009/2010. #btsm https://t.co/jcI0fncKby |
| Liz Salmi @TheLizArmy @KMJtravels @cityofhope Woah! "Awesome!" Please tweet about what it's like being on the trial. We could learn a lot from your experience. #btsm |
| OurBrainBank @ourbrainbank @TheLizArmy @Lifeiskitsch @BTSMchat #BTSM Jessica here from @ourbrainbank Your point, Liz, has come up a number of times. People have told me they feel less panicked at how they're doing between doc meetings when they can input symptoms regularly. |
| Beth E. Finn @Finnspiration @adamhayden @BTSMchat Now that you mention it, I journaled a lot when I was diagnosed and going through treatment, and those entries did help me. Haven't really done that in a long time, though. Must not feel like I need it now... #btsm |
| Rosalind Greene🇺🇸 @rosagreene2020 @adamhayden @TheLizArmy @BTSMchat @SaraRiggare I can say as a healthcare provider, when an individual is diagnosed with an illness such as #btsm, it's very draining on the mind in which control the entire body and how it reacts to the diagnosis. Some people are very active and involved and some when they here the C word... |
| Lynne P. Taylor, M.D. @neulpt Yes! Looks like the dose was lowered after they hit 80K (maybe) #btsm. T3 https://t.co/9OoRXOkI6E |
| Beth Kassab @BethKassab @CBlotner_ My husband wants to say that he likes MyChart. He also was huge into tracking his exercise and food in MyFitnessPal app before the seizure. He's had multiple surgeries and now PICC line so hasn't been able to exercise recently but wants to get back to that. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @BTSMchat We shall see! Have an MRI coming up in just under 2 weeks. But sometimes I think something is nothing— like the hives during /after chemo. Apparently that was an allergy that changed how I did my chemo for rest of year. But other things are nothing! #btsm |
| Erica Robinson @eleighrobs @Finnspiration @BTSMchat T3: Same. I kept a journal, and no matter how silly or crazy some of my symptoms sounded my neurosurgeon, and the medical team always welcomed anything I presented to them. #BTSM |
| Charlie Blotner @CBlotner_ @adamhayden @Finnspiration @BTSMchat That's how I feel about my blog. No longer helpful for me in the way that I needed it to be at the time, but it was in those early years. And, folks who have found it have reached out for community and support. #btsm |
| Liz Salmi @TheLizArmy @adamhayden "Mom" as the agent of interoperability! #btsm |
 | CancerGeek @CancerGeek RT @TheLizArmy: @BTSMchat T2: @BTSMchat T2: We patients only get a few hours in "health care" each year, but we spend over 5,000 waking hours in self care. It's worth it to be tracking our own symptoms and be able to accurately report back to our doctors. #btsm (h/t @SaraRiggare regarding time spent in self care) |
 | Al Musella @AlMusella RT @NicholasBlondin: Takeaway from the first CNS Tumors session at #ASCO18: Takeaway from the first CNS Tumors session at #ASCO18: High mutational burden is rare in newly dx GBM (5%), but when present can predict a beneficial response to immunotherapy (Keytruda or Opdivo). All newly dx pts should get this testing done. #btsm |
| Liz Salmi @TheLizArmy @adamhayden Also, Adam, I might use this comment in a presentation one day. 🤔 #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @ourbrainbank: @TheLizArmy @Lifeiskitsch @BTSMchat #BTSM Jessica here from @ourbrainbank Your point, Liz, has come up a number of times. People have told me they feel less panicked at how they're doing between doc meetings when they can input symptoms regularly. |
 | Dr. Bill Timmer @BillTimmerPhD RT @NCICancerStats: Brain and other nervous system #cancer has a 33.2% 5-year relative survival rate. Find more statistics about this disease here: https://t.co/6gHC9uDCiR #BTSM https://t.co/Y8tc0G2dNg |
| Rosalind Greene🇺🇸 @rosagreene2020 @adamhayden @TheLizArmy @BTSMchat @SaraRiggare ...they don't give up and they want to fight but the mind and the body are not on the same page...That is why it is so important to have a support system and sometimes the people you think should be there are not...and it is not because they don't care...it's the lack of...#btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @eleighrobs: @Finnspiration @BTSMchat T3: @Finnspiration @BTSMchat T3: Same. I kept a journal, and no matter how silly or crazy some of my symptoms sounded my neurosurgeon, and the medical team always welcomed anything I presented to them. #BTSM |
| Liz Salmi @TheLizArmy @neulpt Dr. Taylor. YOU ARE A WIZARD. My Temodar dose WAS lowered. I barely remember that, and yet you pulled that knowledge from a screenshot of my labs from nearly 8 years. 🙌 #btsm cc @CBlotner_ You have a winner. |
| Al Musella @AlMusella RT @NicholasBlondin: My highlight of the #ASCO18 CNS poster session was speaking with @BrainTumorDoc about the Phase 2 SurVaxM results in newly dx GBM. I think that this is a promising therapy and a treatment to keep an eye on! #btsm |
| Erica Robinson @eleighrobs @adamhayden @CBlotner_ @Finnspiration @BTSMchat No, not strange. Incredibly thoughtful, courageous and helpful to others. #BTSM |
| Beth E. Finn @Finnspiration @adamhayden @CBlotner_ @BTSMchat No, not strange. I feel like if I had to go through this #braintumor stuff, other people might as well be able to benefit from my experience. So I feel that duty to keep contributing, too. Just don't let it become a burden to your mental health. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T3. I'd be curious to hear from providers participating if they've noticed any trends in the apps that their patients use (and benefit to them?). #btsm |
| ✌🏼Peacemomma ✌🏽 @peacemomma67 @BTSMchat I think the more opportunities like #BTSM chat & similar activities to get our voices/issues/concerns out there opens the doors understanding & better research. |
| Liz Salmi @TheLizArmy @neulpt Just remembered, dose wasn't lowered. The first data point was pre-Temodar lab, second datapoint is my platelets after my first-ever dose of Temodar. So, shock to the system? #btsm |
| Mariah Jae @MariahJaeee @BTSMchat T4: As a pateint, I understand research follows the money in that it has to be funded & funding usually comes from a balance of interest and hope. Personally when it comes to brain tumors I would love to see more focus on early discovery all of us Asymptomatics out there #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @neulpt @BTSMchat (aside: I loved looking at Bloodwork on MyChart. When I was doing it every week for my year of chemo— fascinating! Except the lymphocytes... on my 7th month without chemo & it was still in dumpster fire last time I checked. Gonna be awhile til that bounces up) #btsm |
 | Gitte Pedersen @DNABARCODE RT @TheLizArmy: 2008: 2008: Astrocytoma diagnosis. 2018: Invited speaker at @ASCO. A lot can happen in 10 years. I had no idea a graphic designer could have a role to play in the future of cancer care. Reality is, patients are a BIG PART of the care team. #ASCO18 #MedX #btsm https://t.co/UVngBE79m3 |
| OurBrainBank @ourbrainbank @eleighrobs @adamhayden @CBlotner_ @Finnspiration @BTSMchat #BTSM building community is so supportive! Blogging, writing, sometimes often and sometimes listening. But for many, just connecting is an important therapy in its own right. |
| Matt Cotcher @MLCotcher RT @peacemomma67: @BTSMchat I think the more opportunities like #BTSM chat & similar activities to get our voices/issues/concerns out there opens the doors understanding & better research. |
| Liz Salmi @TheLizArmy @kschrock997 Hey there! The hashtag to use is #BTSM. Join us here! https://t.co/0oTLDi224V |
| St_Molly_AgentofChaos @Lifeiskitsch RT @CBlotner_: @BTSMchat T3. I'd be curious to hear from providers participating if they've noticed any trends in the apps that their patients use (and benefit to them?). #btsm |
| OurBrainBank @ourbrainbank @peacemomma67 @BTSMchat #BTSM great point. Raising awareness, understanding attitudes to #cancer and what it's like to be a #Patient so important to making progress |
| Liz Salmi @TheLizArmy @adamhayden @CBlotner_ @Finnspiration @BTSMchat My blog also started as a way to log symptoms. Have also felt "the duty" to continue. I celebrate when others start blogging because the new voices are super important. #btsm |
| Erica Robinson @eleighrobs @ourbrainbank @adamhayden @CBlotner_ @Finnspiration @BTSMchat I completely agree! Before I connected with all of you via @NBTStweets I felt like no one knew what I was talking about. The family no one thinks they will ever join, but so proud to be a part of! #BTSM |
| Rosalind Greene🇺🇸 @rosagreene2020 @adamhayden @TheLizArmy @BTSMchat @SaraRiggare ...and fear...and it's okay but find somebody that is willingly to be that person that is needed to make sure you are getting the best state of the art treatments and information. You can't always depend on your Provider (s). Knowledge is the most powerful path to selfcare.#btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat @adamhayden @CBlotner_ @TheLizArmy Wow! That hour flew! Thanks, everyone! Xo #btsm |
| Beth E. Finn @Finnspiration @adamhayden @rosagreene2020 @TheLizArmy @BTSMchat @SaraRiggare I agree 100% that attitude and support system make a world of difference in outcomes. I know in the depths of my soul that my outcome was so good because of my amazing friends and family. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @TheLizArmy: @adamhayden @CBlotner_ @Finnspiration @BTSMchat My blog also started as a way to log symptoms. Have also felt "the duty" to continue. I celebrate when others start blogging because the new voices are super important. #btsm |
| Liz Salmi @TheLizArmy @ZHeatherChamp @BTSMchat Check out the website for @patientslikeme! #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T4. @TheLizArmy @adamhayden and myself are providing input about research initiatives via the FDA, NIH, and DOD. That's big! #btsm |
| Liz Salmi @TheLizArmy @BTSMchat @adamhayden @CBlotner_ Great chat! Fun topic. Let's keep tweeting out app resources/brain tumor hacks all month long. I really love that stuff. #btsm |
 | Jan Oldenburg ☮️ @janoldenburg RT @TheLizArmy: 2008: 2008: Astrocytoma diagnosis. 2018: Invited speaker at @ASCO. A lot can happen in 10 years. I had no idea a graphic designer could have a role to play in the future of cancer care. Reality is, patients are a BIG PART of the care team. #ASCO18 #MedX #btsm https://t.co/UVngBE79m3 |
| Erica Robinson @eleighrobs @BTSMchat @jessicamorris @ourbrainbank Thank you! #BTSM |
| OurBrainBank @ourbrainbank @BTSMchat @jessicamorris #BTSM thanks To @BTSMchat and @ourbrainbank chair of advocacy @adamhayden and here's to #NationalCancerSurvivorsDay ! |
| Rosalind Greene🇺🇸 @rosagreene2020 @adamhayden @TheLizArmy @BTSMchat @SaraRiggare So true Beth, it's a combination of all you mentioned. A comprehensive approach to a comprehensive diagnosis is the approach to take one step at a time...#btsm |
| Beth Kassab @BethKassab @BTSMchat @adamhayden @CBlotner_ @TheLizArmy Thank you for doing this and letting us participate. Sorry to meet this way, but comforting to know people are working on the behalf of patients. Many thanks! #btsm |
| Charlie Blotner @CBlotner_ 😌🧠❤️ #btsm fills a void I used to feel so that others don't have to! https://t.co/XibQOnbo33 |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @adamhayden @CBlotner_ @Finnspiration @BTSMchat I’m trying to be a voice because I’m not as good at being organized, but I am relatable & open & it seems to be a thing that kind of works for... getting people to pay attention. So I started a radio show... type... thing on @SilverLineRADI1. #EverOnward #btsm |
| Liz Salmi @TheLizArmy @CBlotner_ @BTSMchat @adamhayden Yes! If anyone wants to get engaged w/some of the things @CBlotner_, @adamhayden & I are doing, @NBTStweets is doing a great job engaging patients (and care partners like @lisaoleary524) about research prioritization. Find people like @mt_kacey @TomHalkin @StevenLaFond. #btsm |
 | National Brain Tumor Society @NBTStweets RT @eleighrobs: @ourbrainbank @adamhayden @CBlotner_ @Finnspiration @BTSMchat I completely agree! Before I connected with all of you via @NBTStweets I felt like no one knew what I was talking about. The family no one thinks they will ever join, but so proud to be a part of! #BTSM |
 | Sophie @misssophiebot RT @CBlotner_: Helpful health apps, from one nerd to another 🤓🧠👍. #btsm #hcsm https://t.co/8xHCIZ6neY |
| Rosalind Greene🇺🇸 @rosagreene2020 @Finnspiration @adamhayden @TheLizArmy @BTSMchat @SaraRiggare Beth, I agree. So many of my patients don't have support system, let along somebody to help them get thur the treatments and tests that are needed. Therefore, a delay in care is very common which can lead to poor prognosis...I see this a lot and it's heart breaking. #btsm |
| Charlie Blotner @CBlotner_ RT @TheLizArmy: @CBlotner_ @BTSMchat @adamhayden Yes! If anyone wants to get engaged w/some of the things @CBlotner_, @adamhayden & I are doing, @NBTStweets is doing a great job engaging patients (and care partners like @lisaoleary524) about research prioritization. Find people like @mt_kacey @TomHalkin @StevenLaFond. #btsm |
| Charlie Blotner @CBlotner_ @BethKassab @BTSMchat @adamhayden @TheLizArmy The first Sunday of each months we're here for you with organized chats. We're here every day via #btsm in general as well. 😌👍🧠 |
 | Kirk Murphy 🦋🇺🇦 @kirkmurphy RT @TheLizArmy: @BTSMchat T2: @BTSMchat T2: We patients only get a few hours in "health care" each year, but we spend over 5,000 waking hours in self care. It's worth it to be tracking our own symptoms and be able to accurately report back to our doctors. #btsm (h/t @SaraRiggare regarding time spent in self care) |
 | Manmeet Ahluwalia, MD, MBA, FASCO @BrainTumorDoc Thanks @NicholasBlondin! Great interacting with you. Neuro-oncologists at the frontline like you help us bring new therapies to our patients! Looking forward to working together in the field! #CleClinicCancer #GBM #btsm https://t.co/7SVJJuh8lJ |
 | Dr. Jusuf Kristianto, MPH, PhD @JusufKristianto RT @NCICancerStats: Brain and other nervous system #cancer has a 33.2% 5-year relative survival rate. Find more statistics about this disease here: https://t.co/6gHC9uDCiR #BTSM https://t.co/Y8tc0G2dNg |
#BTSM content from Twitter.