#BCSM Transcript
Healthcare social media transcript of the #BCSM hashtag.
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See #BCSM Influencers/Analytics.
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Alicia C. Staley @stales Good evening everyone! Last chat of 2018 starts now! #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci @stales Hi all! Iโm Hillary from @LombardiCancer. I cannot believe itโs our last chat - it means only TWO WEEKS til 2019! #bcsm | |
Alicia C. Staley @stales Please take a moment to say hello, we will get started in a moment #bcsm | |
Alicia C. Staley @stales @HillStirSci @LombardiCancer Welcome! Can you believe it? time is flying by! #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @stales OOH! And I managed to stay up late enough to join. Hanging on the East Coast this week & freezing my bippie off. #bcsm | |
Dr. Deanna Attai @DrAttai hello everyone, Deanna Attai, breast surgeon in LA #bcsm | |
Dr. Deanna Attai @DrAttai @stales HELLO!!!!!!! #bcsm | |
Dennis Keim @denniskeim Howdy from Huskerland, #bcsm friends. Dxed in 2013 with Stage 1 breast cancer. Still NED (No Evidence of Disease) in NE. | |
Julia Mauรฉs @itsnot_pink Hi! Julia from DC. 5.5 years MBC #bcsm | |
Inspire @InspireIsHealth RT @stales: Good evening everyone! Last chat of 2018 starts now! #bcsm | |
Dennis Keim @denniskeim RT @stales: Good evening everyone! Last chat of 2018 starts now! #bcsm | |
Inspire @InspireIsHealth Hello to all in the #BCSM community, John Novack here from Inspire. | |
Alicia C. Staley @stales Must read for #BCSM --- and shout out to @ESchattner - "How Patients Have Transformed A Medical Meeting About Breast Cancer" https://t.co/Ui1tZ9d9DU Excellent article | |
Alicia C. Staley @stales @teaminspire Welcome! #bcsm | |
Alicia C. Staley @stales @itsnot_pink hello, hello! #bcsm | |
Alicia C. Staley @stales @denniskeim hi! #bcsm | |
Alicia C. Staley @stales @DrAttai HELLLLLO #bcsm | |
Alicia C. Staley @stales @itsthebunk hey there #bcsm | |
Dennis Keim @denniskeim @coffeemommy Frozen bippie syndrome. I hate that. :) #bcsm | |
Alicia C. Staley @stales @coffeemommy Welcome!! hee hee. chilly here, eh?! #bcsm | |
Julia Mauรฉs @itsnot_pink @coffeemommy @stales I now have managed to stay awake two weeks in a row! I guess after I met you awesome people IRL I really donโt want to miss โhanging outโ! #bcsm | |
Spannerinmyworks @SpannerInMe Hello from Fort Worth. #bcsm | |
Dr. Kelly Shanahan @stage4kelly Hi! Kelly from Lake Tahoe, former ob/gyn current MBC patient, trying to use miles to book flights to India for @afreshchapter trip in Feb. #bcsm | |
Alicia C. Staley @stales @dammadbrstcancr hi there! Thanks for checking in! #BCSM | |
Dennis Keim @denniskeim RT @stales: Must read for #BCSM --- and shout out to @ESchattner - "How Patients Have Transformed A Medical Meeting About Breast Cancer" https://t.co/Ui1tZ9d9DU Excellent article | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @stales Have the down jacket but missing the hat, gloves and scarf... ๐ฅถ#bcsm | |
Shelley Fuld Nasso @sfuldnasso Hello. Shelley fron National Coalition for Cancer Survivorship @canceradvocacy here from MD #bcsm | |
Julia Mauรฉs @itsnot_pink @stales @ESchattner Awesome piece #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @itsnot_pink @stales ๐ The feeling is mutual, my new friend #bcsm | |
Dr. Kelly Shanahan @stage4kelly Also, happy mom because in 6 days, and 600 miles of solo driving, I get to pick my daughter up in San Diego after her @SemesterAtSea adventure! #bcsm | |
Inspire @InspireIsHealth RT @stales: Must read for #BCSM --- and shout out to @ESchattner - "How Patients Have Transformed A Medical Meeting About Breast Cancer" https://t.co/Ui1tZ9d9DU Excellent article | |
Dr. Kelly Shanahan @stage4kelly โค๏ธ @ESchattner #bcsm #sabcs18 | |
Dr_Dana @Dr_Dana Happy Monday everyone๐๐ป Breast surgeon in Little Rock. Listening and learning. #bcsm | |
Alicia C. Staley @stales Tonight, we have @canceradvocacy @sfuldnasso as our guests this evening! #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @sfuldnasso @CancerAdvocacy Shelley! {hug} #bcsm | |
Alicia C. Staley @stales @SpannerInMe hi there! Welcome #bcsm | |
Dennis Keim @denniskeim RT @stales: Tonight, we have @canceradvocacy @sfuldnasso as our guests this evening! #bcsm | |
Alicia C. Staley @stales @stage4kelly Hello, hello! #bcsm | |
Alicia C. Staley @stales @Dr_Dana welcome! #bcsm | |
Dr. Kelly Shanahan @stage4kelly @sfuldnasso @CancerAdvocacy Hi Shelley! #bcsm | |
Alicia C. Staley @stales We will get started shortly! #bcsm | |
Shelley Fuld Nasso @sfuldnasso @stales @CancerAdvocacy Grateful to be here! #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Jumping into #bcsm chat. Feel free to join the conversation, read along & learn or just please excuse my extra tweets! | |
Alicia C. Staley @stales As a reminder, you can learn more about the #BCSM Community here: https://t.co/rUD9nLTZe4 | |
Alicia C. Staley @stales And you can learn more about the #BCSM tweet chat here: https://t.co/0KzBtOpPgz | |
Ishwaria Subbiah, MD MS @IshwariaMD @stales Hi all #SupportiveCare physician in Houston! Lurking tonight. Will chime in as work/kids allow! #bcsm | |
Alicia C. Staley @stales And, finally, If you ever want to suggest a topic for #BCSM, send me a DM, our contact us here: https://t.co/mZtUOmyB6n | |
Spannerinmyworks @SpannerInMe RT @stales: As a reminder, you can learn more about the #BCSM Community here: As a reminder, you can learn more about the #BCSM Community here: https://t.co/rUD9nLTZe4 | |
Alicia C. Staley @stales @IshwariaMD Hi there! #bcsm | |
Alicia C. Staley @stales Okay, T1 coming up! #bcsm | |
Spannerinmyworks @SpannerInMe RT @stales: And you can learn more about the #BCSM tweet chat here: And you can learn more about the #BCSM tweet chat here: https://t.co/0KzBtOpPgz | |
Spannerinmyworks @SpannerInMe RT @stales: And, finally, If you ever want to suggest a topic for #BCSM, send me a DM, our contact us here: And, finally, If you ever want to suggest a topic for #BCSM, send me a DM, our contact us here: https://t.co/mZtUOmyB6n | |
NCI Cancer Stats @NCICancerStats Female breast #cancer has an 89.7% 5-year relative survival rate. Find more statistics here: https://t.co/OWYkgGIehC #BCSM https://t.co/XhLXzCOVYc | |
Alicia C. Staley @stales T1: Tonight we are chatting with @canceradvocacy @sfuldnasso on their "Return to Functional Status Project" #bcsm | |
Alicia C. Staley @stales T1: Hereโs more information about the project: https://t.co/RIeoPtl4fv @CancerAdvocacy @sfuldnasso #BCSM | |
Shelley Fuld Nasso @sfuldnasso RT @stales: T1: T1: Tonight we are chatting with @canceradvocacy @sfuldnasso on their "Return to Functional Status Project" #bcsm | |
Stephanie Graff, MD, FACP, FASCO @DrSGraff RT @stales: T1: Hereโs more information about the project: T1: Hereโs more information about the project: https://t.co/RIeoPtl4fv @CancerAdvocacy @sfuldnasso #BCSM | |
Alicia C. Staley @stales T1: This new project is working to develop a patient-centered measure of cancer survivorsโ quality of life after cancer treatment @CancerAdvocacy @sfuldnasso #BCSM | |
Robin Holmes @Majormac1 Hello everyone! Joining late. Just chased dog around house with a stick of butter she took off my counter. She is in trouble. #bcsm https://t.co/ryuwC1sNIE | |
Cathy Leman, MA, RD | Dietitian & ER/PR+ Survivor @dammadbrstcancr @DrAttai ๐ #bcsm | |
Alicia C. Staley @stales T1: Quality measurement and reporting in health care are increasingly important for physician payment, and thus have the potential to drive improvements in cancer care. @CancerAdvocacy @sfuldnasso #BCSM | |
Dr. Deanna Attai @DrAttai @Majormac1 sounds very messy... #bcsm | |
Stephanie Graff, MD, FACP, FASCO @DrSGraff Hello! Lost track of time Christmas wrapping. Breast med onc joining in! #bcsm | |
Alicia C. Staley @stales T1: This project needs PATIENT INPUT - so let's make sure to add our thoughts! #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci RT @stales: T1: T1: This new project is working to develop a patient-centered measure of cancer survivorsโ quality of life after cancer treatment @CancerAdvocacy @sfuldnasso #BCSM | |
Alicia C. Staley @stales T1 - Question for #BCSM ---> How do you define โliving wellโ with cancer or after cancer treatment? | |
Alicia C. Staley @stales T1: How do you define โliving wellโ with cancer or after cancer treatment? #bcsm | |
Stephanie Graff, MD, FACP, FASCO @DrSGraff RT @stales: T1 - Question for #BCSM ---> How do you define โliving wellโ with cancer or after cancer treatment? | |
Inspire @InspireIsHealth RT @stales: T1 - Question for #BCSM ---> How do you define โliving wellโ with cancer or after cancer treatment? | |
Dennis Keim @denniskeim @stales Cool. That's certainly what most of us who have gone through cancer treatment would like to return to. Functional Status. #bcsm | |
Inspire @InspireIsHealth RT @stales: T1: Hereโs more information about the project: T1: Hereโs more information about the project: https://t.co/RIeoPtl4fv @CancerAdvocacy @sfuldnasso #BCSM | |
Hillary (Stires) Andrews, PhD @HillStirSci @stales Absolutely love this. @LombardiCancer is working on a Survivorship Initiative that includes work like this. Theyโve included members of @GtownAdvocates which is a great step in the right direction! #bcsm | |
Ginger Riley ~Eternal Optimist~ @gingerly21 RT @NCICancerStats: Female breast #cancer has an 89.7% 5-year relative survival rate. Find more statistics here: Female breast #cancer has an 89.7% 5-year relative survival rate. Find more statistics here: https://t.co/OWYkgGIehC #BCSM https://t.co/XhLXzCOVYc | |
Dr. Kelly Shanahan @stage4kelly T1. MBC is a whole different ball of wax. Iโm living well just by being #NotDeadYet. I am lucky that I can do most things I want to do with extensive bone mets, although I canโt be an ob/gyn thanks to permanent neuropathy #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Living well with/after cancer = Possessing ability mentally & physically to do the things that bring me joy. And defining activities that bring me joy by function vs. form since going back to "normal" isn't necessarily possible. #bcsm | |
Alicia C. Staley @stales RT @denniskeim: @stales Cool. That's certainly what most of us who have gone through cancer treatment would like to return to. Functional Status. #bcsm | |
Alicia C. Staley @stales RT @coffeemommy: Living well with/after cancer = Possessing ability mentally & physically to do the things that bring me joy. And defining activities that bring me joy by function vs. form since going back to "normal" isn't necessarily possible. #bcsm | |
Alicia C. Staley @stales Final thoughts on T1: How do you define โliving wellโ with cancer or after cancer treatment? #bcsm | |
Stephanie Graff, MD, FACP, FASCO @DrSGraff RT @coffeemommy: Living well with/after cancer = Possessing ability mentally & physically to do the things that bring me joy. And defining activities that bring me joy by function vs. form since going back to "normal" isn't necessarily possible. #bcsm | |
Alicia C. Staley @stales T2 coming up! #bcsm | |
Dr. Kelly Shanahan @stage4kelly @UppityCancerP @stales @CancerAdvocacy @sfuldnasso As more of us live longer, we need to be included in the โsurvivorshipโ conversations #bcsm | |
Alicia C. Staley @stales T2: What personal/life activities, events, etc do you consider when you think of a cancer survivor living well DURING cancer treatment? @CancerAdvocacy @sfuldnasso #BCSM | |
patty spears @paspears88 @sfuldnasso @CancerAdvocacy Hi Shelley! #bcsm | |
Alicia C. Staley @stales RT @stage4kelly: @UppityCancerP @stales @CancerAdvocacy @sfuldnasso As more of us live longer, we need to be included in the โsurvivorshipโ conversations #bcsm | |
Alicia C. Staley @stales @paspears88 @sfuldnasso @CancerAdvocacy Welcome Patty! #bcsm | |
Shelley Fuld Nasso @sfuldnasso @UppityCancerP @stales @CancerAdvocacy Yes, we have included patients with metastatic cancer and long-term chronic cancer in the project, because we want to consider both quality of life during AND after treatment. #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @stage4kelly @UppityCancerP @stales @CancerAdvocacy @sfuldnasso And @sfuldnasso & @CancerAdvocacy are DEFINITELY inclusive to the voices of those living with cancer. #bcsm | |
Robin Holmes @Majormac1 #bcsm I just asked @LtColMac1 that question. Response 1. Total remission 2. Having great insurance 3. Quality of life | |
Shelley Fuld Nasso @sfuldnasso @stage4kelly @UppityCancerP @stales @CancerAdvocacy Agree 100% Kelly. We want to include everyone in the conversation. Thank you! #bcsm | |
Alicia C. Staley @stales T2: What does a cancer survivor living well DURING cancer treatment look like to you? How would you define it? #bcsm | |
Dennis Keim @denniskeim T1: Living well? Perhaps when your health is such that it is not a constant source of concern and/or is not noted as being abnormal. #bcsm | |
Inspire @InspireIsHealth RT @stales: T2: T2: What personal/life activities, events, etc do you consider when you think of a cancer survivor living well DURING cancer treatment? @CancerAdvocacy @sfuldnasso #BCSM | |
Hillary (Stires) Andrews, PhD @HillStirSci @stage4kelly @UppityCancerP @stales @CancerAdvocacy @sfuldnasso I almost put quotes around โSurvivorshipโ Initiative. I donโt love the term but they use it to describe anyone whoโs ever been diagnosed with cancer from point of diagnosis. Different needs for different โsurvivorsโ but Iโd hope thatโs taken into consideration! #bcsm | |
Dr. Kelly Shanahan @stage4kelly T2. The ability to do the majority of the things I did before - maybe slower, maybe with some help - being able to cook/shop/go out to eat/to movies/walk in nature/TRAVEL, etc #bcsm | |
Alicia C. Staley @stales @denniskeim yes, I think "living well" is when I'm not thinking about cancer 24-7 #bcsm | |
Dr. Kelly Shanahan @stage4kelly @sfuldnasso @UppityCancerP @stales @CancerAdvocacy Thanks Shelley! #bcsm | |
Alicia C. Staley @stales @dammadbrstcancr figuratively.... what does it mean to you #bcsm | |
Stephanie Graff, MD, FACP, FASCO @DrSGraff @stales NO financial toxicity needs to be part of the discussion too. #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy We totally need to bring up the financial realm when considering how to respond to this question. To live well basic needs must be met first. Hard to "live well" if you are making trade-offs between treatment, rent and food. And many, MANY do. #bcsm | |
Shelley Fuld Nasso @sfuldnasso RT @coffeemommy: We totally need to bring up the financial realm when considering how to respond to this question. To live well basic needs must be met first. Hard to "live well" if you are making trade-offs between treatment, rent and food. And many, MANY do. #bcsm | |
Robin Holmes @Majormac1 @stales #bcsm #2. @LtColMac1 says one stick blood work. No side effects, wants to eat and still go out and have fun. Lol. Maybe this is more for early stage, but he is cracking me up tonight ๐ | |
patty spears @paspears88 A2 I think looking at function during the continuum of care is important, during and after. Also, I think sometimes we compartmentalize toxicity and function and they are directly related. We need better measures for what matters to patients IMHO #bcsm | |
Dennis Keim @denniskeim T2: During chemo. Just making it through each day. Trying not to get an illness, exercising a bit and eating right. Reading a lot. #bcsm | |
Tori Geib @ChefGeib RT @LivingBeyondBC: The #holidays can be a financially stressful time, especially for those who have been diagnosed with #breastcancer. Our Guide to Understanding Financial Concerns offers tips for coping with the costs of breast cancer. Read online or order a copy: https://t.co/hrYe0rLoxh #bcsm https://t.co/MW5ud6P3Xm | |
Dr. Kelly Shanahan @stage4kelly RT @coffeemommy: We totally need to bring up the financial realm when considering how to respond to this question. To live well basic needs must be met first. Hard to "live well" if you are making trade-offs between treatment, rent and food. And many, MANY do. #bcsm | |
Alicia C. Staley @stales RT @paspears88: A2 I think looking at function during the continuum of care is important, during and after. Also, I think sometimes we compartmentalize toxicity and function and they are directly related. We need better measures for what matters to patients IMHO #bcsm | |
Alicia C. Staley @stales Final thoughts on T2: What personal/life activities, events do you consider when you think of a cancer survivor living well DURING cancer treatment? #BCSM | |
Dennis Keim @denniskeim @Majormac1 @stales @LtColMac1 One stick blood work. Right on to that. #bcsm | |
Alicia C. Staley @stales T3 coming up! #bcsm | |
Alicia C. Staley @stales RT @denniskeim: @Majormac1 @stales @LtColMac1 One stick blood work. Right on to that. #bcsm | |
Verna Smith @VernaPolitics RT @DiepFlapBreast: Implants can be a good option for reconstruction, but some struggle with common ongoing implant-related problems. Here are options to help restore natural breast appearance after failed implant #BreastReconstruction. #WeFixFailed #BreastCancer #bcsm https://t.co/IgThUTdZs2 | |
Alicia C. Staley @stales Don't forget to tag your tweets with #BCSM --- some GREAT stuff is flying by tonight! | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Regularly feeling dichotomy between getting excited about research that transforms clinical practice/patient outcomes and reality that access is HUGE barrier & those w/ cancer diagnosis are 2x more likely to declare bankruptcy than average American. #thingstoconsider #bcsm | |
Alicia C. Staley @stales T3: Q3. What personal/life activities, events do you consider when you think of a cancer survivor living well AFTER cancer treatment? @CancerAdvocacy @sfuldnasso #BCSM | |
Shelley Fuld Nasso @sfuldnasso RT @coffeemommy: Regularly feeling dichotomy between getting excited about research that transforms clinical practice/patient outcomes and reality that access is HUGE barrier & those w/ cancer diagnosis are 2x more likely to declare bankruptcy than average American. #thingstoconsider #bcsm | |
#Survivor3x โ๐๐๐พ @chigrl13 RT @sfuldnasso: @UppityCancerP @stales @CancerAdvocacy Yes, we have included patients with metastatic cancer and long-term chronic cancer in the project, because we want to consider both quality of life during AND after treatment. #bcsm | |
Alicia C. Staley @stales T3: How would you describe a cancer survivor living well AFTER cancer treatment? #bcsm | |
Alicia C. Staley @stales @itsthebunk I do believe you can live well during cancer treatment. #bcsm | |
patty spears @paspears88 @stales @dammadbrstcancr Sometimes basic activities like sleeping are affected by drugs and also side effects like pain and neuropathy in your feet.... #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci @denniskeim @Majormac1 @stales @LtColMac1 Stupid Elizabeth Holmes. I wanted that technology to be real so bad. #bcsm | |
Liza B @itsthebunk @chigrl13 I am so sorry to hear that. What is going on? #bcsm | |
Alicia C. Staley @stales @chigrl13 oh, hang in there. #bcsm | |
Talk Pink Radio @TalkPinkRadio RT @Breastcancerorg: Fake (medically-induced) menopause, physical therapy, and fertility woes -- how has being diagnosed with #breastcancer at a young age changed your life? #bcsm https://t.co/XrwGWsrm5V | |
Robin Holmes @Majormac1 @stales @LtColMac1 says going out in the heat again without hot flashes #bcsm | |
Dennis Keim @denniskeim @coffeemommy I agree 100%, Stacey. I was very fortunate to be able to take off from work, had some money in the bank to lean on and that my insurance (with some battles) took care of most of the medical expenses. #bcsm | |
Dr. Kelly Shanahan @stage4kelly Breakthrough treatments donโt mean squat if patients canโt afford them #bcsm @FDAOncology @tmprowell @P4AD_ #WeWillPushCongressToGiveFDAAuthorityOverDrugPricing | |
Alicia C. Staley @stales T3: Living well during treatment and after treatment is a function of physical, mental, emotional points #bcsm | |
Dennis Keim @denniskeim @HillStirSci @Majormac1 @stales @LtColMac1 I have to say that at my local cancer center it's always been a one stick deal. They are rock stars. #bcsm | |
Alicia C. Staley @stales T3: I think we can learn a lot from "Prepare for surgery, heal faster" to apply to survivorship https://t.co/jX2GonukTp #bcsm | |
Alicia C. Staley @stales @chigrl13 how can I help? #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci THIS!! ๐๐ผ๐๐ผ Iโve been on a soapbox more times than I can count. #bcsm | |
Dr. Kelly Shanahan @stage4kelly @itsthebunk @stales I will be on treatment for the rest of my life. I think Iโm living pretty damn well right now. Do I have arthralgias from aromatase inhibitors? Hell yeah. Did my eyeballs bleed when I was on Gemzar/5FU? Or was it cytoxan/taxol? Yep, but it didnโt stop me from doing things. #bcsm | |
Dennis Keim @denniskeim I wish I had more preparation for dealing with the aftermath of chemo. Or even the side effects during. My nurse navigator helped. #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci @denniskeim @Majormac1 @stales @LtColMac1 Thatโs amazing! #bcsm | |
Astrid Johnson @AstridNJohnson RT @Breastcancerorg: Fake (medically-induced) menopause, physical therapy, and fertility woes -- how has being diagnosed with #breastcancer at a young age changed your life? #bcsm https://t.co/XrwGWsrm5V | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @stage4kelly @FDAOncology @tmprowell @P4AD_ +1 Also, @dramyabernethy was just named deputy commissioner of @US_FDA so we've got another patient advocate ally in the (FDA) house. #bcsm | |
Uppity Cancer Pt @UppityCancerP @drdonsdizon speaking on collaborative treatment, quality of life goals, and metastatic breast cancer. He is my Oncology god #bcsm https://t.co/LzPE5rIteO | |
Cathy Leman, MA, RD | Dietitian & ER/PR+ Survivor @dammadbrstcancr @HillStirSci Thanks! We share the same soapbox!! ๐ Iโm a broken record about this; feel we need #breastcancer recovery and healing centers!! For real. Not kidding. #bcsm | |
Alicia C. Staley @stales RT @denniskeim: I wish I had more preparation for dealing with the aftermath of chemo. Or even the side effects during. My nurse navigator helped. #bcsm | |
Alicia C. Staley @stales Final thoughts on T3: What activities do you consider when you think of a cancer survivor living well AFTER cancer treatment? #bcsm | |
Alicia C. Staley @stales T4 coming up #bcsm | |
Dr. Kelly Shanahan @stage4kelly These are things that will greatly improve QOL - and probably outcomes too - for cancer patients. Too bad they are not covered or available to most of us. #bcsm | |
Shelley Fuld Nasso @sfuldnasso @stage4kelly @itsthebunk @stales Kelly, I love your zest for life and how you share it with your fellow advocates, in person and virtually! Thank you! #bcsm | |
Liza B @itsthebunk @chigrl13 I am so sorry. I have been in similar circumstances. I get it. I just sent a little donation :-) I hope it helps. #bcsm | |
Dennis Keim @denniskeim Have to leave early tonight. Hope everyone has an enjoyable holiday season. See you in 2019! :) #bcsm | |
Shelley Fuld Nasso @sfuldnasso RT @stage4kelly: These are things that will greatly improve QOL - and probably outcomes too - for cancer patients. Too bad they are not covered or available to most of us. #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci @dammadbrstcancr When my BFF went through treatment she wanted to talk to a psychiatrist in August. They didnโt have an appointment until mid October and no opportunity for psychologist. Insane to me. #bcsm | |
Shelley Fuld Nasso @sfuldnasso @UppityCancerP @drdonsdizon Agree! Love @drdonsdizon!! #bcsm | |
Alicia C. Staley @stales T4: What are the biggest impacts on your quality of life from your cancer or cancer treatment? Did/does your care team help you address these challenges? @CancerAdvocacy @sfuldnasso #BCSM | |
Alicia C. Staley @stales @denniskeim Happy Holidays Dennis! See you in 2019 #bcsm | |
Shelley Fuld Nasso @sfuldnasso @coffeemommy @stage4kelly @FDAOncology @tmprowell @P4AD_ @dramyabernethy @US_FDA That's exciting news. Congratulations @dramyabernethy! #bcsm | |
Dr. Kelly Shanahan @stage4kelly But I have to give kudos to @BartonHealth for wanting to start offering some of these cancer support services in our community (even though I think they should get an oncologist/offer chemo STAT!!) #bcsm | |
patty spears @paspears88 A3 Are support groups/networks in or out? I went to one and a few of us still meet monthly for lunch -19 years later... bonds formed and we learned coping skills from each other... through one members deep depression, lots of loss, but so much support when needed #bcsm | |
Jennifer Plichta MD (she/her) @JenniferPlichta RT @BreastAdvocate: 15 #Mastectomy #Tattoo ideas proudly shown by #BreastCancer survivors. #bcsm https://t.co/BKNVI52oFN | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @HillStirSci @dammadbrstcancr Ugh. Hard enough for some to ask. And then a brick wall. We've had individuals from #bcsm and #MetastaticBC community unable to get consults/referrals to palliative care. Bassackwards and totally messed up. | |
Shelley Fuld Nasso @sfuldnasso @HillStirSci @dammadbrstcancr That's terrible! We need to do better at meeting psychosocial needs of cancer patients #bcsm | |
Shelley Fuld Nasso @sfuldnasso @denniskeim Thanks for your input, Dennis! Happy holidays. #bcsm | |
Dr. Kelly Shanahan @stage4kelly Psychosocial support is vital. @TahoeForest cancer center does this so well #bcsm | |
Shelley Fuld Nasso @sfuldnasso @bridienixon I love the way you said this - "keep growing to counter the grief of feeling so many things end." Thank you for sharing! #bcsm | |
Dr. Kelly Shanahan @stage4kelly @denniskeim Happy holidays Dennis! #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @denniskeim Sending warm wishes for a healthy and happy new year #bcsm | |
Alicia C. Staley @stales T4: What are the biggest impacts on your quality of life from your cancer or cancer treatment? Did/does your care team help you address these challenges? #BCSM | |
Hillary (Stires) Andrews, PhD @HillStirSci @coffeemommy @dammadbrstcancr Bassackwards is right. #bcsm | |
Liza B @itsthebunk @stales @CancerAdvocacy @sfuldnasso T4. Biggest long-term impacts: #financialtoxicity, #PTSD /emotional health, impact on work and career, life disruption, long term effects on physical body etc... so, yes, it's been pretty well-rounded. #bcsm | |
Alicia C. Staley @stales RT @stage4kelly Psychosocial support is vital. @TahoeForest cancer center does this so well #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci RT @sfuldnasso: @HillStirSci @dammadbrstcancr That's terrible! We need to do better at meeting psychosocial needs of cancer patients #bcsm | |
Dr. Kelly Shanahan @stage4kelly @paspears88 Some of my dearest friends, my rocks, are my online MBC friends. #bcsm | |
Robin Holmes @Majormac1 @stales @CancerAdvocacy @sfuldnasso #bcsm Medication keeping Mac alive cause extreme fatigue, Nausea, loss of muscle mass & weight gain. Told doing much better then most so probably should not change anything. | |
Alicia C. Staley @stales @chigrl13 Next time I"m in LA - I'll make sure to connect with you. Take care xoxo #bcsm | |
Dr. Lina Mountziaris, MD PhD, FACS @DrMountziaris RT @BreastAdvocate: The signs and symptoms of #breastcancer. Remember it's not always a lump! #bcsm #breastcancerawareness https://t.co/5veaZgPh1Y | |
#Survivor3x โ๐๐๐พ @chigrl13 RT @BreastAdvocate: The signs and symptoms of #breastcancer. Remember it's not always a lump! #bcsm #breastcancerawareness https://t.co/5veaZgPh1Y | |
Nauman Saleem Siddiqui, MD MPH FACP @HemOnc_AI RT @ASCOPost: HDAC Inhibitor May Overcome Endocrine Resistance in Advanced Breast Cancer https://t.co/NJY8tSC8wk #bcsm #oncology #ESMO18 | |
Elizabeth Berger @eberger32 RT @BreastAdvocate: 15 #Mastectomy #Tattoo ideas proudly shown by #BreastCancer survivors. #bcsm https://t.co/BKNVI52oFN | |
Dr. Kelly Shanahan @stage4kelly @dammadbrstcancr @HillStirSci This is difficult because @medicare and most private insurers donโt reimburse for nutrients services u less diabetic or severely cachectic. #bcsm | |
Shelley Fuld Nasso @sfuldnasso @itsthebunk @stales @CancerAdvocacy It's hard not to be angry, Liza! #bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci @itsthebunk @stales @CancerAdvocacy @sfuldnasso Its completely understandable. Cancer is the worst. Hugs!!! #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Interesting question. Impacts continue to change. Anti-estrogen therapy started to take down my liver, that was it's own adventure. Off Tamoxifen, I feel great. Five yrs later, head is in a good place. Challenges based on recon surgery but all-in-all, my QoL is fabulous. #bcsm | |
Dee Sparacio @womenofteal RT @NCISymptomMgmt: There can (and should) be sex after cancer treatment! This study is looking for a way to improve sexual desire in women who have had breast or gynecologic cancers. To learn more or join: https://t.co/0MAkZN9XY9 @NRGonc #NCORP #bcsm #gyncsm https://t.co/zi0puiq5bn | |
Shelley Fuld Nasso @sfuldnasso @itsthebunk @stales @CancerAdvocacy Hugs back to you! #bcsm | |
Dr. Kelly Shanahan @stage4kelly T4. Death hanging over my head puts a damper on QOL, but is balanced by the liberating โFTSโ that accompanies it. I am more inclined to do what I want to do and give the old ๐๐ปto those who donโt like it ๐#bcsm | |
Robin Holmes @Majormac1 @stage4kelly @dammadbrstcancr @HillStirSci @Medicare Our local cancer center @west_cancer offers free help from a nutritionist which I have tapped into for various issues. Its helpful-#bcsm | |
Hillary (Stires) Andrews, PhD @HillStirSci @stage4kelly @dammadbrstcancr @Medicare Ugh thatโs frustrating. I hope that as โSurvivorshipโ research becomes more appreciated and with some help from amazing advocates this can change! #bcsm | |
Dr. Kelly Shanahan @stage4kelly @itsthebunk @stales @CancerAdvocacy @sfuldnasso No apologies needed Liza. Cancer sucks and takes so much from us. Iโd probably be in a down mood if I werenโt counting down the hours until I get my daughter!! #bcsm | |
Fernando A. Angarita, MD @ferandang RT @BreastAdvocate: 15 #Mastectomy #Tattoo ideas proudly shown by #BreastCancer survivors. #bcsm https://t.co/BKNVI52oFN | |
Alicia C. Staley @stales Any last thoughts for tonight? #bcsm | |
Shelley Fuld Nasso @sfuldnasso @stage4kelly But maybe we should all live like that! We never know how much time we have, with or without cancer. #bcsm | |
Alicia C. Staley @stales @sfuldnasso Any comments as we end tonight's chat? #BCSM | |
patty spears @paspears88 @itsthebunk @stales @CancerAdvocacy @sfuldnasso Having a place to go where you can be angry and be understood is so important... vent away......#bcsm | |
Alicia C. Staley @stales RT @coffeemommy: Interesting question. Impacts continue to change. Anti-estrogen therapy started to take down my liver, that was it's own adventure. Off Tamoxifen, I feel great. Five yrs later, head is in a good place. Challenges based on recon surgery but all-in-all, my QoL is fabulous. #bcsm | |
Shelley Fuld Nasso @sfuldnasso @coffeemommy The fact that the impacts continue to change highlights the need for good post-treatment care. #bcsm | |
Alicia C. Staley @stales T4: QoL definitely gets better with time. In a good space, and that allows for better focus on further improving overall health #bcsm | |
Stacey Tinianov (she/her) MPH, BCPA @coffeemommy Wonderful to be in the virtual presence of the awesome #bcsm community tonight. Thank you all for sharing your thoughts & making yourselves vulnerable in order to catalyze positive change. And TY @sfuldnasso & @CancerAdvocacy for listening so well ๐ Warm wishes to all. | |
Alicia C. Staley @stales T4: Survivorship ebbs and flows..... I just want to make sure it's trending in the right direction #bcsm | |
Dr. Kelly Shanahan @stage4kelly @stales I am incredibly grateful to this bcsm community. May 2019 bring more research funding, more treatments to improve OS AND QoL - and more opportunities to do #bcsm in person! | |
Robin Holmes @Majormac1 @stales Donโt leave butter on the counter under any circumstances. Wishing everyone a happy, uneventful, no ER visits, bad scans and lot of joy this holiday season. #bcsm https://t.co/bqei53dtVr | |
Shelley Fuld Nasso @sfuldnasso @stales Thank you to everyone for your input! Very helpful. We are grateful to be able to include the voices and needs of so many people affected by cancer in this project. #bcsm | |
Alicia C. Staley @stales @Majormac1 LOL #bcsm | |
Alicia C. Staley @stales Please go check out @canceradvocacy here: https://t.co/IhphMWTaXF #bcsm | |
Shelley Fuld Nasso @sfuldnasso @stales You all inspire me. I appreciate you sharing your perspective, your frustration, your outrage, and your advocacy! #bcsm | |
Alicia C. Staley @stales Lots of great advocacy opportunities with @CancerAdvocacy --- check it out! https://t.co/IhphMWTaXF #bcsm | |
SPECFORD59 @SPECFORD59 @HillStirSci @dammadbrstcancr This is a serious problem. Lack of mental health professionals who are aware of the cancer issues and who are willing to work in patients with immediate needs. A nationwide "cancer qualified" mental health professional organization would be welcomed. #BCSM | |
Spannerinmyworks @SpannerInMe RT @stales: Please go check out @canceradvocacy here: Please go check out @canceradvocacy here: https://t.co/IhphMWTaXF #bcsm | |
Alicia C. Staley @stales Thanks everyone for joining in tonight! #bcsm | |
Dr. Kelly Shanahan @stage4kelly RT @stales: Lots of great advocacy opportunities with @CancerAdvocacy --- check it out! https://t.co/IhphMWTaXF #bcsm | |
#Survivor3x โ๐๐๐พ @chigrl13 Thank you #bcsm for your generosity. Sarah and I appreciate you. Much love. ๐๐๐๐๐๐๐๐ก๐ ๐ก๐ https://t.co/PqAd9DSAAu | |
Alicia C. Staley @stales Thank you @Sfuldnasso !! You inspire all of us. These chats help us grow as advocates! Thank you for all you do! #bcsm | |
Shelley Fuld Nasso @sfuldnasso @stales One more point: we have heard the feedback that "return to functional status" is not a meaningful term for patients. Our patient committee will meet in February and consider all the input we've received and come up with a better name for the concept we want to measure. #bcsm | |
OncLive SOSS @OncLiveSOSS Improvements in surgical techniques and the development of neoadjuvant therapies have allowed wider eligibility for sentinel lymph node surgery, explains Judy C. Boughey, MD, of @MayoCancerCare #bcsm https://t.co/NNvIQF6zri | |
#Survivor3x โ๐๐๐พ @chigrl13 RT @sfuldnasso: @stales You all inspire me. I appreciate you sharing your perspective, your frustration, your outrage, and your advocacy! #bcsm | |
Shelley Fuld Nasso @sfuldnasso @stales @CancerAdvocacy Thanks, Alicia, for facilitating a great discussion and helping us gain important insights to inform our work! I am grateful to you for your leadership and advocacy! HUGS! #bcsm | |
Alicia C. Staley @stales Check out: https://t.co/QxBxwHOz02 @CancerAdvocacy #bcsm | |
Alicia C. Staley @stales Good night everyone! GROUP HUG FOR 2018!!! #bcsm | |
Shelley Fuld Nasso @sfuldnasso RT @coffeemommy: Wonderful to be in the virtual presence of the awesome #bcsm community tonight. Thank you all for sharing your thoughts & making yourselves vulnerable in order to catalyze positive change. And TY @sfuldnasso & @CancerAdvocacy for listening so well ๐ Warm wishes to all. | |
Hillary (Stires) Andrews, PhD @HillStirSci Happy holidays, safe travels, and so many hugs! See you all in 2019! โค๏ธโค๏ธ #BCSM | |
Alicia C. Staley @stales @sfuldnasso We can ask that in a follow up! That's great feedback. #bcsm | |
Alicia C. Staley @stales Happy Holidays everyone! #bcsm | |
Spannerinmyworks @SpannerInMe Have a wonderful and safe holiday and terrific New Year. #bcsm | |
Dr. Lillian Erdahl MD @LillianErdahlMD @stales @CancerAdvocacy @sfuldnasso Love the title #bcsm | |
Alicia C. Staley @stales Next chat is January 2019! #bcsm | |
Shelley Fuld Nasso @sfuldnasso @stales It is my honor! #bcsm | |
Dr. Kelly Shanahan @stage4kelly #bcsm https://t.co/VHbHzhxXa4 | |
Alicia C. Staley @stales Please reach out via the #BCSM bat signal or via DM over the next few weeks if you need help! We will be checking in! | |
Spannerinmyworks @SpannerInMe RT @stales: Next chat is January 2019! #bcsm | |
Spannerinmyworks @SpannerInMe #bcsm https://t.co/EFsB8jfasw | |
Alicia C. Staley @stales @sfuldnasso @CancerAdvocacy Thanks for joining us! Lots to think about from tonight's chat! #BCSM | |
#Survivor3x โ๐๐๐พ @chigrl13 RT @stales: Please reach out via the #BCSM bat signal or via DM over the next few weeks if you need help! We will be checking in! | |
Alicia C. Staley @stales RT @stage4kelly: T4. Death hanging over my head puts a damper on QOL, but is balanced by the liberating โFTSโ that accompanies it. I am more inclined to do what I want to do and give the old ๐๐ปto those who donโt like it ๐#bcsm | |
When BC Happens @whenBChappens RT @BreastAdvocate: The signs and symptoms of #breastcancer. Remember it's not always a lump! #bcsm #breastcancerawareness https://t.co/5veaZgPh1Y | |
Cathy Leman, MA, RD | Dietitian & ER/PR+ Survivor @dammadbrstcancr @DrAttai Same to you!!! #bcsm | |
Alicia C. Staley @stales @sfuldnasso @coffeemommy Exactly - Still can't wear contacts after the serious dry eye episodes I had on tamo. awful. #bcsm |
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