#BCSM Transcript
Healthcare social media transcript of the #BCSM hashtag.
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See #BCSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | NCI Cancer Stats @NCICancerStats When diagnosed at the localized stage, #BreastCancer has a 98.8% 5-year relative survival rate. Learn more here: https://t.co/wUKAVfKF1H #BCSM https://t.co/3unCTe8zHo |
 | Kimberli S. Cox MD @kimberli_coxmd Breast surgeon in chilly PHX (really) checking in while walking the dog #bcsm https://t.co/Ribmn4hb5o |
 | Howard Karpoff @doctorkarpoff 9 pm on the east coast: was 80° for this breast surgeon just slightly northwest of NYC #bcsm |
| Howard Karpoff @doctorkarpoff RT @stales: HEY #BCSM - We need to share this far and wide. UCLA research survey - endocrine therapy use, side effects, role of the treatment team. Open to anyone treated for breast cancer - please SHARE and RT #bcsm https://t.co/Qf1eRg53I6 https://t.co/bmkrhBg6b7 |
 | ISBP @TheISBP RT @ASCOPost: Trastuzumab Deruxtecan in Advanced HER2-Positive Gastric and Breast Cancers https://t.co/qGUK6A7mJf #bcsm #stcsm #oncology |
 | Hillary (Stires) Andrews, PhD @HillStirSci @itsthebunk Hi everyone! I'm Hillary, former breast cancer research scientist, current cancer research advocate and health and science policy wonk (in the making). #bcsm |
 | Kathy Gori @kathygori @kimberli_coxmd Shibas are such cuties! #bcsm |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @kimberli_coxmd A Shiba Inu! Love those dogs. @1111linno has one, name is Kumo. Super dog. #bcsm |
 | Stephanie Graff, MD, FACP, FASCO @DrSGraff Hello #bcsm 👋🏻 Breast Med Onc excites to learn tonight! |
 | Liza B @itsthebunk @DrAttai Howdy! #bcsm |
 | IBC Research Fdn @IBCResearch Ginny here. Bouncing along on a shuttle bus for the next hour. Was in Dallas for #TBCRC clinical trial mtg. Headed home #BCSM |
 | Erin Miller @LazarexaErin Hi to everyone - Erin Miller @lazarexcf tuning in for a chat! #bcsm |
 | Gail Zahtz 🇮🇱 @GailZahtz Hi! Checking in for one of the last weeks from MN before our move back to NY. Professional digital healthcare communicator, personally declined hospice and (BY”H) 2 years NED this month. Formerly wheelchair bound, did the 5k this Mother’s Day for BC research. #bcsm |
 | Julia Maués @itsnot_pink Hi #bcsm! Happy to be joining from DC to discuss this important topic and great guest host. MBC since 2013 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings, all! The Mighty Mouth is mostly lurking, since I gotta get up at oh-dark-thirty tomorrow and it's late 'round these parts. Breast cancer dx '07, Stage IIa, since end of '08 NED. #bcsm |
 | Dr. Deanna Attai @DrAttai @kimberli_coxmd we are chilly in LA as well, enjoying it because summer most definitely will be here soon #bcsm |
 | Inspire @InspireIsHealth @itsthebunk Hi Liza and all in the #bcsm community, John Novack here from Inspire. |
| Kathy Gori @kathygori Hey there, 2x bc’er checking in from chilly rainy Nor Ca 🍷 country where we had believe it or not, snow in Stockton, and other parts of Northern California yesterday. #bcsm |
| Liza B @itsthebunk @DrSGraff Hi! Welcome! #bcsm |
 | Terri Coutee @6state @itsthebunk @stales Thanks @itsthebunk Good evening from the great state of WA on PST @6state #PatientAdvocate for all options of #BreastReconstruction after #mastectomy 2x-er myself and #DIEPflap #bcsm |
| Howard Karpoff @doctorkarpoff @itsthebunk last week it was in the 40s...i think i prefer this (except for all the pollen) #bcsm |
| Kathy Gori @kathygori @itsthebunk @kimberli_coxmd Hi Liza! #bcsm |
| Liza B @itsthebunk @teaminspire Howdy! Welcome, John! #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @itsthebunk @kimberli_coxmd @1111linno #bcsm https://t.co/GzE1kK9Yel |
| Kimberli S. Cox MD @kimberli_coxmd @doctorkarpoff 72 and breezy here in Phoenix. I am wearing a coat LOL #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @MightyCasey @itsthebunk @kimberli_coxmd @1111linno Casey, always one to come in with fin, um fan-fare ;-) #BCSM |
 | Jennifer Plichta MD (she/her) @JenniferPlichta RT @DiepFlapBreast: Choosing to “go flat” is an option to be discussed and respected as equally as the many reconstructive procedure options available. #BreastReconstruction #PlasticSurgery #bcsm https://t.co/CDaAEClqSj |
| Gail Zahtz 🇮🇱 @GailZahtz Excited about tonight’s topic on many levels- the multiple costs of advocacy (not only financial) #bcsm |
| IBC Research Fdn @IBCResearch Look who I found while in Dallas! @paspears88 & @Prof_Riggins While we've all headed back home it was fun to be IRL together! #BCSM https://t.co/8cf3qkhGI3 |
 | Matthew J. Sikora, PhD @mjsikora Welcome to the jungle, K-T! #breastcancer #bcsm #PIlife |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @GailZahtz @itsthebunk @kimberli_coxmd @1111linno #bcsm https://t.co/wrqaQmCkr9 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey I think I need gin ... #bcsm |
 | Lex @Lex_in_CO Chilling under a blanket in No Colorado. Dx stage4 de novo 2013 and still here #bcsm |
| IBC Research Fdn @IBCResearch @itsthebunk Thanks...its a bit bumpy & poor signal but I'm here! #bcsm |
 | Hello_U👋🏼 @MommysCancer #breastcancer chat happening right now! |
 | FollowHeidi @FollowHeidi Hello all - so happy to be able to join my #bcsm team tonight! Heidi in Atlanta...2 x dx, stage iiib |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @itsthebunk Oh, no problems. Just late here, and I want dinner! Until then ... gin? Magic 8 Ball sez "signs point to YES" #bcsm |
| Hillary (Stires) Andrews, PhD @HillStirSci @itsthebunk @FollowHeidi I was thinking the same thing! Hi friend! #bcsm |
 | Theresa's Research Foundation @MetastaticOdds #bcsm josh from TRF here . Advocate w many hats lost mom to MBC IN 2013 |
| Gail Zahtz 🇮🇱 @GailZahtz A1- Financial costs of advocacy- this has been a big topic lately with a lot of people I’ve been talking with. Conferences, travel, extra time needed if someone isn’t doing great physically and/or needs a caregiver to also come- it really adds up- and who pays? #BCSM |
| Hillary (Stires) Andrews, PhD @HillStirSci @MetastaticOdds Hey Josh! 👋 #bcsm |
 | Sandi Stanford @sandisues RT @drchrysopoulo: At PRMA we use the @BreastAdvocate app to reduce such time constraints & greatly facilitate the #SharedDecisionMaking process. The app provides patients access to the info they need both before & after the doctor visit. #BreastCancer #BRCA #BreastReconstruction. @diepflapbreast |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey WHOA DANG. I warned you. #ginofuckingclock #bcsm https://t.co/zUrN9xrYHy |
 | Breast Advocate @BreastAdvocate RT @matteolambe: |
| Gail Zahtz 🇮🇱 @GailZahtz I think this really needs to be addressed. We talk about #patientsincluded and patients being a voice “at the table” but the costs of travel, its complexity and the reality of living life with a condition can make it too hard. #BCSM |
| IBC Research Fdn @IBCResearch T1a I get creative. Scholarships, help with the conf, share rooms, travel by bus....basically pick what's most imp to you & search out ways to do it. Most of us dont have unlimited $$$ #BCSM |
| FollowHeidi @FollowHeidi @itsthebunk Me too- this happens ALL the time to me. Makes me blue... #bcsm |
| Liza B @itsthebunk RT @GailZahtz: I think this really needs to be addressed. We talk about #patientsincluded and patients being a voice “at the table” but the costs of travel, its complexity and the reality of living life with a condition can make it too hard. #BCSM |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1(whatevs) general observation: I call all advocacy appearance/content requests from funded entities that do NOT include $$ for advocate/activist "warm handshakes/cold bagels payment model" and say **** no. LOUD. #bcsm |
| Julia Maués @itsnot_pink RT @GailZahtz: A1- Financial costs of advocacy- this has been a big topic lately with a lot of people I’ve been talking with. Conferences, travel, extra time needed if someone isn’t doing great physically and/or needs a caregiver to also come- it really adds up- and who pays? #BCSM |
| Gail Zahtz 🇮🇱 @GailZahtz My twitter is not working right. I need a twitter mechanic, or plumber- I’m in the chat #bcsm and can mostly only see my tweets and the @itsthebunk moderator. Hm... and, thank goodness @MightyCasey gin escapades. |
| Julia Maués @itsnot_pink RT @GailZahtz: I think this really needs to be addressed. We talk about #patientsincluded and patients being a voice “at the table” but the costs of travel, its complexity and the reality of living life with a condition can make it too hard. #BCSM |
 | Jamil Kali @jamilkali RT @CancerDotNet: A @JCO_ASCO study shows less than half of women with breast or #ovariancancer do not receive #genetictesting. @StanfordCancer’s Dr. Allison Kurian explains how it helps predict risk, and why it is so important:: https://t.co/5go07l0II9 #genetics #bcsm #breastcancer #gyncsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: as a #patientsincluded charter author, I am ON BLAST with there has to be something in this for me. Warm fuzzies don't pay my rent. #FYPM #bcsm |
| Lex @Lex_in_CO Truth. As a patient still working I would love to consider more options but treatments cause missed work too so missing that paid time is also a consideration |
| Gail Zahtz 🇮🇱 @GailZahtz T1 A very recent conversation (would cc, but @itsthebunk I think you asked us not to mention people?) included ideas of having a checklist of what advocates need in order for travel to be possible, more than conference fees or even only hotels. #bcsm |
| Terri Coutee @6state @itsthebunk Not always. Be savvy. For meals, there are often free events sponsored by companies who want to engage with the #patientadvocacy community. #PatientStoriesMatter Express a collaborative effort to help the community you serve. #bcsm |
 | Tori Geib @ChefGeib @itsthebunk More often than not: no. The hardest thing for advocates who are also on disability is coming up with the funds up front to be reimbursed. Conferences that have covered travel (flight/hotel) make it MUCH easier when we are already financially struggling in many cases. #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm |
| Theresa's Research Foundation @MetastaticOdds @itsthebunk t1 our organization provides scholarships but a lot of times it’s not enough and also many patients can’t afford upfront . We are making changes to our process this year and also move our conference around to make sure we try and make it a little easier #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @Lex_in_CO Is it the pay or the time or both? EG would additional compensation make a differrence? #BCSM |
| Liza B @itsthebunk RT @MightyCasey: T1: if you don't know what #patientsincluded involves, here you go: T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm |
| Julia Maués @itsnot_pink T1 #bcsm: Some organizations really do it right! @MetastaticOdds is one. The 6thMBCc is coming up on September 19-20 and the advocacy scholarship application process opened today: https://t.co/nmESriGPrC. It's a medical conference with a large advocacy contingency and program |
| Gail Zahtz 🇮🇱 @GailZahtz @MightyCasey @itsthebunk Latest #BCSM |
| Terri Coutee @6state RT @MightyCasey: T1: if you don't know what #patientsincluded involves, here you go: T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz RT @MightyCasey: T1: if you don't know what #patientsincluded involves, here you go: T1: if you don't know what #patientsincluded involves, here you go: https://t.co/B5qE0pWMZf #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @itsthebunk Oh, sweet baby Jesus on a Ritz cracker, where do I start? This is endemic in the solopreneur/consulting game, too, so I at least was prepared when I pivoted into healthcare. 1st: don't be grateful they asked, YOU have the secret sauce (you speak #patient) #bcsm |
 | Leslie @Leslieks Sorry I'm late! Hey gang! #bcsm |
| Stephanie Graff, MD, FACP, FASCO @DrSGraff I heard @DrAttai mention donating airline miles for advocates once...I’d love a list of orgs that allow for that. Such an easy way to give. #bcsm |
| Theresa's Research Foundation @MetastaticOdds RT @itsnot_pink: T1 #bcsm: T1 #bcsm: Some organizations really do it right! @MetastaticOdds is one. The 6thMBCc is coming up on September 19-20 and the advocacy scholarship application process opened today: https://t.co/nmESriGPrC. It's a medical conference with a large advocacy contingency and program |
| Stephanie Graff, MD, FACP, FASCO @DrSGraff RT @itsnot_pink: T1 #bcsm: T1 #bcsm: Some organizations really do it right! @MetastaticOdds is one. The 6thMBCc is coming up on September 19-20 and the advocacy scholarship application process opened today: https://t.co/nmESriGPrC. It's a medical conference with a large advocacy contingency and program |
 | metaMartha @Martha__Carlson Martha in IL ... Hi! Almost 4 1/2 years with mets. #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @itsthebunk Oh, good, then a shoutout to @BarbyIngle and the @powerofpain They give high subsidizes for their events and she does advocacy for patients being able to be fairly compensated for advocacy so it’s possible. #BCSM |
| Liza B @itsthebunk @DrSGraff @DrAttai YES! great idea! That could help so much! #bcsm Especially for cross-country flights when the max the orgs allow in scholarships is $400/$500 for MOnday travel #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @itsthebunk it's easy at the beginning to be grateful AF that "somebody noticed me and my message!" but don't let that mindset take over. Read some freelance + solo consulting blogs for tips. You're an asset. Bill accordingly! #bcsm |
| Liza B @itsthebunk RT @MightyCasey: @itsthebunk Oh, sweet baby Jesus on a Ritz cracker, where do I start? This is endemic in the solopreneur/consulting game, too, so I at least was prepared when I pivoted into healthcare. 1st: don't be grateful they asked, YOU have the secret sauce (you speak #patient) #bcsm |
 | Barby Ingle Official @BarbyIngle RT @GailZahtz: @itsthebunk Oh, good, then a shoutout to @BarbyIngle and the @powerofpain They give high subsidizes for their events and she does advocacy for patients being able to be fairly compensated for advocacy so it’s possible. #BCSM |
| Gail Zahtz 🇮🇱 @GailZahtz @itsnot_pink @MetastaticOdds Do they cover other costs beyond the conference itself? Just wondering what others are doing. Recent conversations lead to ideas that we need to find ways to help with additional costs of patient advocate attendance. #BCSM |
| Terri Coutee @6state @DrSGraff @itsthebunk @DrAttai Love this idea @DrSGraff and @DrAttai Sign me up! #bcsm |
| Terri Coutee @6state RT @DrSGraff: I heard @DrAttai mention donating airline miles for advocates once...I’d love a list of orgs that allow for that. Such an easy way to give. #bcsm |
| Lex @Lex_in_CO @GailZahtz Both but compensation would make it more doable #BCSM also an “Invite” letter to take to boss maybe too 🤷♀️ |
| Inspire @InspireIsHealth RT @itsnot_pink: T1 #bcsm: T1 #bcsm: Some organizations really do it right! @MetastaticOdds is one. The 6thMBCc is coming up on September 19-20 and the advocacy scholarship application process opened today: https://t.co/nmESriGPrC. It's a medical conference with a large advocacy contingency and program |
| FollowHeidi @FollowHeidi @itsthebunk Due to the financial costs of #breastcancer advocacy, many underserved women rarely get a chance to have their voices heard...even when the topic is focused on women in need! It’s a ridiculous situation. #bcsm |
 | International Pain Foundation® @iPainOfficial RT @GailZahtz: @itsthebunk Oh, good, then a shoutout to @BarbyIngle and the @powerofpain They give high subsidizes for their events and she does advocacy for patients being able to be fairly compensated for advocacy so it’s possible. #BCSM |
| Theresa's Research Foundation @MetastaticOdds @itsnot_pink Thanks I think by working directly with patients we can improve the process. We most recognize that advocates are more than patients- they have so many talents that can help lead to real progress #bcsm |
| Julia Maués @itsnot_pink @itsthebunk Registration fees are another issue! I'm in DC so conferences that are here I can attend without travel costs. But as @itsthebunk has heard me say "I'm already working for free! Can't expect me to pay to do it!" #bcsm |
| Liza B @itsthebunk RT @FollowHeidi: @itsthebunk Due to the financial costs of #breastcancer advocacy, many underserved women rarely get a chance to have their voices heard...even when the topic is focused on women in need! It’s a ridiculous situation. #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz If we really want patient advocates at conferences and other travel events, we have to make real compensation for expense that are just realistically higher for patient advocates than say hcp advocates. For example, perhaps longer stays for rest. Caregiver coverage. #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @itsthebunk If you're not sure what the heck I'm talking about, start with @ThisIsSethsBlog and Erika Napoletano https://t.co/0qsTPIntUV #bcsm |
| Terri Coutee @6state As more an more specialties welcome the #PatientAdvocacy voice and presence at conferences, 1. Lower registration fees 2. Special hotel pricing 3. Planned events to discuss topics with meals included (think sponsored events) #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz A recent conversation with awesome #medlibs women- covering daycare while at conferences a fabulous benefit. Moms (and Dads) who can only travel with kids, this is a big differentiator. #bcsm |
| Julia Maués @itsnot_pink @GailZahtz @MetastaticOdds The conference registration is free for patient advocates and they cover hotel plus give a flight stipend. All carefully thought out to maximize number of advocates and minimize each advocate's out-of-pocket cost #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @Martha__Carlson Welcome, Martha!! #bcsm |
| Julia Maués @itsnot_pink RT @MetastaticOdds: @itsnot_pink Thanks I think by working directly with patients we can improve the process. We most recognize that advocates are more than patients- they have so many talents that can help lead to real progress #bcsm |
| Liza B @itsthebunk RT @GailZahtz: A recent conversation with awesome #medlibs women- covering daycare while at conferences a fabulous benefit. Moms (and Dads) who can only travel with kids, this is a big differentiator. #bcsm |
| Barby Ingle Official @BarbyIngle @GailZahtz @itsthebunk @powerofpain Thank you for the shout out! We do what we can!!!! Nov 14-16, 2019. UCLA Luskin Conference Center. #iPainSummit2019 #BCSM |
| Theresa's Research Foundation @MetastaticOdds @GailZahtz @itsnot_pink This year we are booking hotels directly and hoping that stipends will cover more than just flights - also maybe breaking them down by region we can provide more #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @GailZahtz OMFG #medlibs are AMAZEBALLS. Follow @pfanderson if you don't already. #bcsm |
| Liza B @itsthebunk RT @BarbyIngle: @GailZahtz @itsthebunk @powerofpain Thank you for the shout out! We do what we can!!!! Nov 14-16, 2019. UCLA Luskin Conference Center. #iPainSummit2019 #BCSM |
| Gail Zahtz 🇮🇱 @GailZahtz What a great idea- a letter for work, perhaps with benefits of employee attendance? #bcsm |
 | Living Beyond Breast Cancer @LivingBeyondBC Find support and connect with other young women impacted by #breastcancer in our closed Facebook group. Talk honestly with others about parenting, weight gain, body image, and more. Ask questions and get support from others who understand. Join now: https://t.co/62nbwvRsEu #bcsm https://t.co/cFnJIOHCop |
| Liza B @itsthebunk RT @MightyCasey: @GailZahtz OMFG #medlibs are AMAZEBALLS. Follow @pfanderson if you don't already. #bcsm |
| FollowHeidi @FollowHeidi In order to attend events as an #advocate, I use vacation days from my full-time job. Many #breastcancer #Patients don’t have that same opportunity, and therefore can’t attend. #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @MetastaticOdds @itsnot_pink Excellent #BCSM |
| Leslie @Leslieks @itsthebunk One of the reasons I don't travel much is travel drains me so badly. I get sick after and end up needing even more time off. #bcsm |
| Dr. Deanna Attai @DrAttai @MetastaticOdds @GailZahtz @itsnot_pink incredible work, thanks for sharing #bcsm |
| Liza B @itsthebunk RT @FollowHeidi: In order to attend events as an #advocate, I use vacation days from my full-time job. Many #breastcancer #Patients don’t have that same opportunity, and therefore can’t attend. #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @MightyCasey @pfanderson I just adore her and her tribes! #BCSM |
| metaMartha @Martha__Carlson @itsnot_pink @GailZahtz @MetastaticOdds This was first research conf I attended. Loved it. #bcsm |
| Leslie @Leslieks @itsthebunk Are there conferences with scheduled nap times? 😂 #BCSM |
| IBC Research Fdn @IBCResearch @FollowHeidi @itsthebunk Good point Heidi. It's important that those folks are there to bring their own voice. #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2: confession - I still am able to be [mostly] energizer bunny level when I need to be. Some of it's genetic (my 'rents were social extrovert AF, fed on interaction), count myself lucky at almost-70-yo that I can still show up. But I do need rest more often now. #bcsm |
| Tori Geib @ChefGeib @itsthebunk The upfront costs have been what has kept me from attending some conferences that I felt would be beneficial. Ex: $400 per/night for a hotel for a 3 day conference + other travel and conference fees when you only make $1200 a month is impossible. #bcsm |
| Tori Geib @ChefGeib @MetastaticOdds @itsthebunk @GailZahtz @itsnot_pink That is a HUGE help! Thank you! #bcsm |
| Theresa's Research Foundation @MetastaticOdds RT @ChefGeib: @itsthebunk The upfront costs have been what has kept me from attending some conferences that I felt would be beneficial. Ex: $400 per/night for a hotel for a 3 day conference + other travel and conference fees when you only make $1200 a month is impossible. #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey HAH. I hadn't had a "vacation" in over a decade when I got TWO last year. Getting another one next month. Lots of work interspersed, but still ... #winning #bcsm |
| Terri Coutee @6state @itsthebunk One word .... coffee ☕️😂 #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @Leslieks @itsthebunk Seriously, we’ve been talking about this- many patients need scheduled rest time. The schedules can be too demanding while juggling with one’s own illness. A break place for rest would be really excellent for #inclusion #BCSM |
| Barby Ingle Official @BarbyIngle @itsthebunk T2. When I have an event I know to rest before and after. And sometimes even during, I go to classes and exhibitors but skip dinners and extra outings. Bring blankets and pillows as needed. Comfy clothes, etc #bcsm I live an extreme time cheaters life at home and when out. |
| Leslie @Leslieks @DrAttai @itsthebunk I'm telling you we need a spa weekend meet up. Turn it into advocacy, sort of our own conference. #bcsm |
| Lex @Lex_in_CO @GailZahtz Yep. See some from work vendors too. Especially if it even touches on “working” with cancer Staying productive Teleworking solutions etc. make it a win win 👍 #BCSM |
| Julia Maués @itsnot_pink @itsthebunk SABCS was intense. And we didn't really have a place to hang out and just relax. Again, especially hard for metastatic patients on drugs forever. An advocate lounge is definitely a must. With food! #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @BarbyIngle @itsthebunk See, I knew she’d be great on this topic ;-)) #BCSM |
 | wwLeslie @wwleslie Yup. I still need scheduled rest time. #bcsm |
| Liza B @itsthebunk @GailZahtz @Leslieks Yes, the @StanfordMedX Wellness Room has been hugely helpful! #medx #bcsm |
| Julia Maués @itsnot_pink @Martha__Carlson @GailZahtz @MetastaticOdds you started with the best! #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @Lex_in_CO Would love this on a list. #BCSM |
| Theresa's Research Foundation @MetastaticOdds @DrAttai @LynnHowie1 @DrSGraff We will take them #bcsm |
| Kathy Gori @kathygori @itsthebunk @FollowHeidi I’d go if it was nearby, say UCSF but my schedule would be too tight for other places , but I don’t know much about how to do that #bcsm |
 | Enlightening Results 💡 @GraceCordovano RT @MightyCasey: @GailZahtz OMFG #medlibs are AMAZEBALLS. Follow @pfanderson if you don't already. #bcsm |
| Dr. Deanna Attai @DrAttai @MetastaticOdds @LynnHowie1 @DrSGraff Oh - great to know! Do you have a program link you can share? This is great news! #bcsm |
| Tori Geib @ChefGeib @itsthebunk I look at sessions with other advocate friends that are going beforehand so we can sometimes divide, conquer and make sure we are still practicing self care. We still go to some all together, but scheduling this ahead of time helps. We always meet up and share notes later #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @kimberli_coxmd Yeah, that's totally a consideration to be put near top of the list. Key is for person to KNOW and SPEAK UP about what their needs/limits are. #epatient advocate/activist folx must view this as WORK, and construct schedule THEY need. #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @itsthebunk @itsnot_pink Yes! Very few people outside of the patient/hcp community understand that the challenges can be equally as big when someone is NED than during “active” cancer. Let’s not judge people’s needs but find ways to meet them. #BCSM |
| Gail Zahtz 🇮🇱 @GailZahtz T2- What we’re doing right here can help. I’ve been at conferences with other advocates and we’ve tag teamed together to do social media coverage for ourselves and others- share, collaborate and lessen the burden. #bcsm |
| Enlightening Results 💡 @GraceCordovano @DrSGraff @DrAttai I have reached out to the people @gofundme, suggesting new services such as hotel reward point & airline miles donations to be pitched to their new product team. I keep emphasizing the unmet needs patients & carepartners face. Send them a note. #bcsm |
| Liza B @itsthebunk RT @MightyCasey: @kimberli_coxmd Yeah, that's totally a consideration to be put near top of the list. Key is for person to KNOW and SPEAK UP about what their needs/limits are. #epatient advocate/activist folx must view this as WORK, and construct schedule THEY need. #bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey I just hit the wall that says "switch off, girl" - early reveille tomorrow, so I gotta bail. Much love, all! #bcsm |
| Kimberli S. Cox MD @kimberli_coxmd @MightyCasey Exactly: speak up! And event planners need to ask, “how canI help,what do you need?” #bcsm |
| Kimberli S. Cox MD @kimberli_coxmd RT @MightyCasey: @kimberli_coxmd Yeah, that's totally a consideration to be put near top of the list. Key is for person to KNOW and SPEAK UP about what their needs/limits are. #epatient advocate/activist folx must view this as WORK, and construct schedule THEY need. #bcsm |
| IBC Research Fdn @IBCResearch I do t take my own advice well but recommend being very deliberate in picking what to attend & pace yourself. You know what you can do #bcsm |
| Julia Maués @itsnot_pink @itsthebunk Again, I'll mention @MetastaticOdds's conference. He's been talking to MBC patients to design the advocacy program and will incorporate our idea of a wellness session (yoga or meditation) before or after the conference (sorry, Josh, no way out now!) #bcsm https://t.co/nmESriGPrC |
| Gail Zahtz 🇮🇱 @GailZahtz @kimberli_coxmd @MightyCasey We were talking about a patient advocate checklist- other needs that advocates may or may not think about before attending. When I was a main speaker at a conference and in an electric wheelchair at the time, none of us accounted for my transportation. I got stuck till 1am. #BCSM |
| Tori Geib @ChefGeib @itsthebunk Know you don’t have to attend everything in the moment, especially if the sessions are available by recording after the fact. I try to make sure to attend in person what I can; knowing I can see some of the sessions later takes the pressure away from having be everywhere #bcsm |
 | couragesings @couragesings RT @GailZahtz: @Leslieks @itsthebunk Seriously, we’ve been talking about this- many patients need scheduled rest time. The schedules can be too demanding while juggling with one’s own illness. A break place for rest would be really excellent for #inclusion #BCSM |
| Gail Zahtz 🇮🇱 @GailZahtz T3- emotional costs of advocacy- my younger two children right now who are never happy when I’m doing evening chats. It cuts into Mommy time. That’s just honest. #bcsm |
| IBC Research Fdn @IBCResearch The losses we face take a huge emotional toll. You have to find a way to cope. #bcsm |
| Terri Coutee @6state @itsthebunk I hit a wall earlier this year. Last year had many hi's and lo's for me. I highly recommend checking out @afreshchapter #Renewal #Recharge #Refresh and stepped out of our daily roles and peaked into other advocacy in April '19: https://t.co/RhkSyL4rYX #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz About advocate lounges- also making sure that everything that advocates would attend is accessible for all. It’s hard enough traveling as a patient advocate, one shouldn’t have to ask to be “accommodated” #bcsm |
| Terri Coutee @6state @DrAttai @itsthebunk I noticed 😊👟#bcsm |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Oh my ****ING GAWD I can't leave until I address this. Being required to "perform your pain" or relive your experience on a loop, ad infinitum is ... insulting. A body of work includes lived experience. Put it on your CV, and then use that CV. #bcsm |
| Dr. Deanna Attai @DrAttai @6state @itsthebunk thanks for not calling me out! #bcsm |
 | inteliquet, an IQVIA business @inteliquet RT @stales: HEY #BCSM - We need to share this far and wide. UCLA research survey - endocrine therapy use, side effects, role of the treatment team. Open to anyone treated for breast cancer - please SHARE and RT #bcsm https://t.co/Qf1eRg53I6 https://t.co/bmkrhBg6b7 |
| Julia Maués @itsnot_pink @IBCResearch Yes! My thought process is usually: - Why I am doing this? - So my friends and I can live longer - Why do I want to live longer? - To spend more time with my son - Then be conscious of not missing too much time with my son while I'm still here #bcsm |
| metaMartha @Martha__Carlson RT @IBCResearch: The losses we face take a huge emotional toll. You have to find a way to cope. #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz Thanks Liza. I am so grateful for my personal patient journey experiences, because each one helps me better advocate for others. We were thinking about a checklist that could help advocates know what their extra needs would be- different for each patient and time. #BCSM |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @itsthebunk @GailZahtz @kimberli_coxmd FYI @HealthHats has some GREAT stuff on this. https://t.co/YMkK4J9fnR #bcsm |
| Terri Coutee @6state RT @GailZahtz: About advocate lounges- also making sure that everything that advocates would attend is accessible for all. It’s hard enough traveling as a patient advocate, one shouldn’t have to ask to be “accommodated” #bcsm |
| Lex @Lex_in_CO A3 might be small personal roadblock for me. Asking for help (even $ vs still wanting to prove I can do it all). Newsflash I can’t but get stuck in that gear at times. #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @MightyCasey On a different side: I’ve been interviewing for a new gig. I didn’t include my patient journey at ALL on LinkedIn or wherever. I had to explain my hiatus, it came up, and found that people viewed it as a huge asset to my hc work. Who knew? #BCSM |
| Terri Coutee @6state @GailZahtz @itsthebunk Great way to connect and collaborate, too @GailZahtz #bcsm |
| Julia Maués @itsnot_pink @IBCResearch The hardest part ever #bcsm |
| Theresa's Research Foundation @MetastaticOdds RT @itsnot_pink: @IBCResearch Yes! My thought process is usually: - Why I am doing this? - So my friends and I can live longer - Why do I want to live longer? - To spend more time with my son - Then be conscious of not missing too much time with my son while I'm still here #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @6state @itsthebunk Yes, let’s see side events in lounges, where there is child care, connected family and caregiver events. Great place for personal relationships to tweetchats. Let’s expand the work based on advocate needs rather than make it smaller! #BCSM |
| Tori Geib @ChefGeib @itsthebunk Build relationships with other advocates. Not only have they become some of my dearest friends, at the end of the day they are the ones who truly know the ups and downs of what I’m going through as an advocate living with #MBC Patient advocates become our own support system #bcsm |
| Theresa's Research Foundation @MetastaticOdds RT @itsnot_pink: @itsthebunk Again, I'll mention @MetastaticOdds's conference. He's been talking to MBC patients to design the advocacy program and will incorporate our idea of a wellness session (yoga or meditation) before or after the conference (sorry, Josh, no way out now!) #bcsm https://t.co/nmESriGPrC |
| Julia Maués @itsnot_pink @itsthebunk I'll just emphasize @IBCResearch's point about the toll of losing friends we make along the way. It is SO HARD. Last month I was in a hotel here in DC and remembered the last time I was there two friends were with me and now they're both gone 😢 #bcsm |
 | Adrian Lee @Adrianvlee Very proud moment! Congrats to @npriedig and all in the Lee-Oesterreich lab for providing such a nurturing environment. @oesterreichs @UPMCHillmanCC @pittcmu_mstp @PittTweet #bcsm https://t.co/hqmCBpj7r6 |
| Gail Zahtz 🇮🇱 @GailZahtz I don’t know if it’s a pet peeve per sey, but if anyone has advice on how they balance off hours’ advocacy with family- I’m so open to hearing it. Just the evening chats alone cause tension with my kids. Ideas welcome! #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz RT @ChefGeib: @itsthebunk Build relationships with other advocates. Not only have they become some of my dearest friends, at the end of the day they are the ones who truly know the ups and downs of what I’m going through as an advocate living with #MBC Patient advocates become our own support system #bcsm |
| Hillary (Stires) Andrews, PhD @HillStirSci Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area |
 | Andrea @BraveBosom @BartosChristina @CRGHFertility Hugs to you! You are brave for sharing your experiences and so glad the fertility preservation was a success. Have you heard about the #BCSM community? |
| Julia Maués @itsnot_pink @itsthebunk I have one important one: A speaker absolutely needs to have their travel paid for, no excuses. #bcsm |
| Theresa's Research Foundation @MetastaticOdds @itsnot_pink @itsthebunk It’s just makes me happy that we are on the right track . Only way that we can make impact is if we all work together. Our goal is to give advocates a platform #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @itsthebunk @Lex_in_CO This is why we need to be proactive to help advocates be advocates. As you mentioned, being a patient means asking for help more than anyone would have ever imagined. A cost of advocacy shouldn’t be going into that reserve. #BCSM |
| Tori Geib @ChefGeib @itsthebunk Also, I treat advocacy as my job and have developed boundaries to have a “work/life balance”, but it’s taken a while. Saying no is the hardest thing for me still because it feels like an opportunity lost, but I have to balance my self care and needs along with my work #bcsm |
| Julia Maués @itsnot_pink @ChefGeib @itsthebunk Yes! And we need to support each other #bcsm |
| Theresa's Research Foundation @MetastaticOdds RT @itsnot_pink: @itsthebunk I have one important one: @itsthebunk I have one important one: A speaker absolutely needs to have their travel paid for, no excuses. #bcsm |
| Theresa's Research Foundation @MetastaticOdds RT @HillStirSci: Lessons for cancer research conference organizers from #bcsm: Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area |
| Theresa's Research Foundation @MetastaticOdds RT @GailZahtz: @itsthebunk @Lex_in_CO This is why we need to be proactive to help advocates be advocates. As you mentioned, being a patient means asking for help more than anyone would have ever imagined. A cost of advocacy shouldn’t be going into that reserve. #BCSM |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @GailZahtz: @MightyCasey On a different side: @MightyCasey On a different side: I’ve been interviewing for a new gig. I didn’t include my patient journey at ALL on LinkedIn or wherever. I had to explain my hiatus, it came up, and found that people viewed it as a huge asset to my hc work. Who knew? #BCSM |
| Andrea @BraveBosom Hey #BCSM! Please share some love and follow @BartosChristina who is documenting her journey #prechemo and experience with fertility preservation. #BRCA |
| FollowHeidi @FollowHeidi @itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm |
| Terri Coutee @6state RT @HillStirSci: Lessons for cancer research conference organizers from #bcsm: Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area |
| Lex @Lex_in_CO So to this and other QOL topics after my dx I started taking my daughter with me to work conferences. Evenings were still family time #BCSM finding a way to fit it all in 💕 |
| Gail Zahtz 🇮🇱 @GailZahtz @itsthebunk @itsnot_pink @IBCResearch @MightyCasey I still feel Jodi’s presence at every #BCSM |
| FollowHeidi @FollowHeidi Getting #cancer #patients to events for education, support or even rest should be a crucial focus for #healthcare companies! #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz RT @FollowHeidi: @itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm |
| Tori Geib @ChefGeib RT @HillStirSci: Lessons for cancer research conference organizers from #bcsm: Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area |
| Liza B @itsthebunk RT @FollowHeidi: @itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm |
| Tori Geib @ChefGeib RT @itsnot_pink: @itsthebunk I'll just emphasize @IBCResearch's point about the toll of losing friends we make along the way. It is SO HARD. Last month I was in a hotel here in DC and remembered the last time I was there two friends were with me and now they're both gone 😢 #bcsm |
| Liza B @itsthebunk RT @FollowHeidi: Getting #cancer #patients to events for education, support or even rest should be a crucial focus for #healthcare companies! #bcsm |
| Terri Coutee @6state RT @FollowHeidi: @itsthebunk I’ve always like the idea of sponsors helping #patients get to #advocacy events-it can be done easily! Companies+individuals can donation airline miles, hotel points, rental car points, etc. people are afraid to ask for this kind of assistance but it’s necessary. #bcsm |
| Tori Geib @ChefGeib RT @LivingBeyondBC: Find support and connect with other young women impacted by #breastcancer in our closed Facebook group. Talk honestly with others about parenting, weight gain, body image, and more. Ask questions and get support from others who understand. Join now: https://t.co/62nbwvRsEu #bcsm https://t.co/cFnJIOHCop |
| Gail Zahtz 🇮🇱 @GailZahtz @Lex_in_CO Yes! This was a whole conversation- let’s have childcare covered as a benefit to attending conferences, make family friendly evening events, and other ways to accommodate, no encourage, parents bringing their children! #BCSM cc @pfanderson |
| Andrea @BraveBosom Popping in to say hello #bcsm and sorry I was late! And as usual I'm being totally random today 🤓 |
| Howard Karpoff @doctorkarpoff RT @HillStirSci: Lessons for cancer research conference organizers from #bcsm: Lessons for cancer research conference organizers from #bcsm: -when planning a conference, include patient advocates from day 1 -secure funding BEFORE asking advocates to attend -ensure your speakers know advocates will be present (#scicomm!) -have a designated advocate area |
| Hillary (Stires) Andrews, PhD @HillStirSci @itsthebunk Who's starting the nonprofit to coordinate airline miles, hotel points, and conferences that support patient advocates?? 😋 #bcsm |
| Julia Maués @itsnot_pink @itsthebunk You rocked this @itsthebunk #bcsm |
| Andrea @BraveBosom RT @stales: Hey #bcsm crew!! @itsthebunk is guest hosting #bcsm TONIGHT at 6 pm PT/9 pm ET on "The Costs of Advocacy (financial, physical, emotional, etc.) and Ideas to Address Them." Bring your experiences and ideas! cc: @DrAttai |
| Terri Coutee @6state @itsthebunk Thanks for hosting this week @itsthebunk Final thoughts, everyone go take some time away from the phone, computer, and drain your brain, put your feet up, eat some chocolate or have @DrAttai send some fresh veggies! Great chat everyone #PatientAdvocacy #bcsm |
| Lex @Lex_in_CO RT @GailZahtz: @Lex_in_CO Yes! This was a whole conversation- let’s have childcare covered as a benefit to attending conferences, make family friendly evening events, and other ways to accommodate, no encourage, parents bringing their children! #BCSM cc @pfanderson |
| Hillary (Stires) Andrews, PhD @HillStirSci @itsnot_pink @itsthebunk Couldn't agree more! Such a great conversation. #bcsm |
| Andrea @BraveBosom @itsthebunk Looks like I missed a really great topic tonight. BLARGH! #BCSM |
| Lex @Lex_in_CO RT @FollowHeidi: Getting #cancer #patients to events for education, support or even rest should be a crucial focus for #healthcare companies! #bcsm |
| Liza B @itsthebunk @DrAttai Thanks Deanna! And thank to all! #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz Wrapping up an amazing #bcsm Huge bravo to @itsthebunk for guest hosting and doing an amazing job steering the ship of amazing people! I’ll leave with this: if we truly want to include patient advocates- we should find others to carry the costs so they can be fabulously included! |
| Tori Geib @ChefGeib @itsthebunk Thank you for hosting @itsthebunk ! Great job! #bcsm |
| Gail Zahtz 🇮🇱 @GailZahtz @HillStirSci @itsthebunk Or can we find one that exists already that could broaden by including this within their mission? #BCSM |
| Theresa's Research Foundation @MetastaticOdds Great chat! Thank you everyone for all you do! Feel free to message me or email josh@theresasresearch.org #bcsm |
 | Catherine Cole @catcole992003 RT @BreastAdvocate: A new #cancer study made headlines this week as researchers found that a low-fat #diet helps reduce the risk of dying from #BreastCancer. #bcsm https://t.co/4Ji3RgJt8p |
| Lex @Lex_in_CO RT @itsnot_pink: @itsthebunk You rocked this @itsthebunk #bcsm |
 | Mary Craige @MaryCraige Bottom line - avoid processed junk in your diet. Eat the rainbow of fruits and veggies. And move your body every day. #BreastCancer #breastcancerawareness |
| Hillary (Stires) Andrews, PhD @HillStirSci @itsthebunk @itsnot_pink Oh oh! Other last thought - anyone going to @CancerAdvocacy’s CPAT symposium June 25-26? I can’t but can we get together? #bcsm |
| Lex @Lex_in_CO Calling it. Team #BCSM rocks! https://t.co/r0SXRL8pga |
 | CONCERT_TCRC @ConcertTcrc Great work Dr Astrid Przezdziecki! |
| Kathy Gori @kathygori @itsthebunk Great job @itsthebunk #bcsm |
 | Eddie's🔁Retweet @edjlazar RT @SalutDenise: |
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