#BCSM Transcript

Healthcare social media transcript of the #BCSM hashtag.
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Dr. Kelly Shanahan @stage4kelly
Hi all. After almost 10 days of snow or rain, the sun finally appeared at Lake Tahoe!! A happy Kelly, former ob/gyn current MBC patient checking in. #bcsm
Dr. Deanna Attai @DrAttai
hi everyone, Deanna Attai, breast surgeon in LA #bcsm
Dr. Kelly Shanahan @stage4kelly
The $5 billion to build a wall could fund a hell of a lot of #research #bcsm
Howard Karpoff @doctorkarpoff
Hi braest surgeon from slightly upstate NY lurking... #bcsm
Dr. Deanna Attai @DrAttai
@doctorkarpoff Howard thanks for all your meeting tweets over the weekend - was following along! #bcsm
Stephanie Graff, MD, FACP @DrSGraff
Hello friends. Breast med onc in KC. #bcsm
IBC Research Fdn @IBCResearch
You got that right @stage4kelly !! So much research is needed that will benefit people rather than separate them. #bcsm
Howard Karpoff @doctorkarpoff
That's breast surgeon...after 12 hours at the keyboard....transposing way to much #bcsm
Mary L Gorden @marylgorden
Mary in the Sierra foothills and glad to see the snow melting joining the conversation Finished TX for bc in October #BCSM
Alicia C. Staley @stales
Good evening #bcsm
Dr_Dana @Dr_Dana
Hello all👋🏻 Breast surgeon in Little Rock.Listening and learning. #bcsm
Linda Frembes @lindafrembes
Hi, I've been off Twitter for a while but back now. Almost 5 years post-dx Stage 1 IDC. :) Glad to see you all tonight. #bcsm
Howard Karpoff @doctorkarpoff
@DrAttai Deanna - hope my tweets didn't make you too crazy ; was just warming up for the ASBrS tweet-fest #bcsm
Dr. Deanna Attai @DrAttai
@doctorkarpoff I found it helpful, looked like a good conference #bcsm
Emily Garnett @emrgarnett
Emily here, 33yo, living with MBC since 11/2017, baker of fantastic chocolate chip cookies, mom to a 3yo, and lover of cats, extensive mets to bones, currently on a clinical trial for ER+ MBC (2nd line of trent) #bcsm
Liza Bernstein @itsthebunk
Hi to the #bcsm crew!
Jamie Holloway, PhD @jamienholloway
Hi #bcsm friends, Jamie in NoVA. 6+yrs NED after early stage TNBC. Scientist and advocate.
IBC Research Fdn @IBCResearch
Saying hi from Indiana. TN #IBC dx 1994, will mark 25 yr from dx next month. RN involved in 24/7 #breastcancer advocacy #bcsm
Jamie Holloway, PhD @jamienholloway
@itsthebunk Hi friend, good to see you here again! #bcsm
IBC Research Fdn @IBCResearch
@itsthebunk Howdy Ms Liza! Good to 'see' you 😀#bcsm
Liza Bernstein @itsthebunk
@jamienholloway HI friend! Good to see you and to be here! :-) #bcsm
Liza Bernstein @itsthebunk
@IBCResearch Hi Ms Ginny! Good to see you too!! :) #bcsm
Alicia C. Staley @stales
KNOCK KNOCK ... is this thing on? #bcsm
Uppity Cancer Pt @UppityCancerP
Headline should read primary care doctors are not cancer experts and are best at supporting patients when they receive cancer treatment recommended by experts #bcsm #bccww
Alicia C. Staley @stales
@DrAttai hi there! #bcsm
Howard Karpoff @doctorkarpoff
@DrAttai nice meeting Smallish, multidisciplinary Nice location #bcsm
Alicia C. Staley @stales
@doctorkarpoff hello, hello! #bcsm
Hillary Stires, PhD @HillStirSci
@stales Hi friends! 👋🏼 I’m Hillary, a postdoc at @Lombardi coming down off a high of a weekend at the #AAASMtg. And knitting because @itsnot_pink tweeted about it earlier and it got me thinking... 🧶 🤗 #bcsm
Alicia C. Staley @stales
@lindafrembes welcome back! #bcsm
Alicia C. Staley @stales
@itsthebunk hello, do I know you? LOL #bcsm
Liza Bernstein @itsthebunk
Liza here - I've had 3 separate cases of invasive breast cancer, beginning in 1994. Still dealing with long term side effects... but happy to be back with my #bcsm friends! :)
Rod Ritchie @malefitness
Now five years since the start of treatment. Five years wiser about this disease that I now know men can get too. NED. #bcsm
Alicia C. Staley @stales
@jamienholloway HEY #bcsm
Alicia C. Staley @stales
@IBCResearch HI !! how are you? #bcsm
Alicia C. Staley @stales
@malefitness hey Rod, nice to see you! #bcsm
NCI Cancer Stats @NCICancerStats
In 2015, there were an estimated 3,418,124 women living with female #BreastCancer in the US. Find more statistics on this cancer type here: https://t.co/JNI015e0Zq #BCSM https://t.co/kIg65NvQ4T
Linda Frembes @lindafrembes
@stales Thanks! I've missed making connections like the ones here. I forgot that Twitter isn't just a cesspool of hate and trolls. #bcsm
Alicia C. Staley @stales
It's open mic night on #BCSM --- that means, anything goes!
Liza Bernstein @itsthebunk
@stales Ummm, who are you? LOL!! #bcsm
Alicia C. Staley @stales
What's on your mind? What would YOU like to talk about? #bcsm
Alicia C. Staley @stales
@lindafrembes Stay tuned into #BCSM - it's all good here.
Liza Bernstein @itsthebunk
RT @stales: It's open mic night on #BCSM --- that means, anything goes!
Dr. Deanna Attai @DrAttai
RT @stales: It's open mic night on #BCSM --- that means, anything goes!
Aleksandra Popadich @alexpopadich
RT @doctorkarpoff: The $5 billion to build a wall could also pay for 50 million mammograms. Just sayin' #bcsm
Daniel Stover, MD @StoverLab
Hey all - I’m Dan, a med onc from Ohio back for part of tonight after missing too many weeks! #bcsm
Alicia C. Staley @stales
Head's up #BCSM --- I'm at #SCOPE2019 all week. If there is something on the agenda that you'd like to learn about, let me know!
Dr. Deanna Attai @DrAttai
@stales what's the conf about? #bcsm
Bridget🦇Nixon @bridienixon
For #bcsm open mike night my Q is: any advice on DIEP flap surgery? I am getting it in a month. What was your experience like? #breastCancer #reconstruction
Alicia C. Staley @stales
Here is the link to the @SCOPESummit https://t.co/KoVOAJmhiO #bcsm
Liza Bernstein @itsthebunk
RT @stales: Head's up #BCSM --- I'm at #SCOPE2019 all week. If there is something on the agenda that you'd like to learn about, let me kno…
Howard Karpoff @doctorkarpoff
RT @stales: Here is the link to the @SCOPESummit https://t.co/KoVOAJmhiO #bcsm
Alison @AlisonObrPhD
@HillStirSci @stales @Lombardi @itsnot_pink Hello everyone! 👋🏼 I'm Alison, a postdoc @RutgersBHS decompressing from a day full of experimental setup to learn more about tyrosine kinase signaling and metastasis. And watching basketball, because it's my second love. 😊 #bcsm
Alicia C. Staley @stales
@DrAttai clinical trials, clinical operations... With a nice focus on how to educate PATIENTS about clinical research #bcsm
Linda Frembes @lindafrembes
My onco recently left the state to join a private practice. Any tips on searching for a new one after almost 5 years with my 1st doc? #bcsm
Dr. Kelly Shanahan @stage4kelly
@StoverLab Hi Dan!! #bcsm
Liza Bernstein @itsthebunk
@Stickit2Stage4 @stales Hi!! Same here!!! HUGS! :-) #bcsm
Frank Ingram, MD @Chucktowndoc
Hi! I’m Frank, a community pathologist in Charlotte, NC. I sign out breast biopsies, lumpectomies and mastectomies almost every day. #BCSM
Uppity Cancer Pt @UppityCancerP
@bridienixon Why did you choose DIEP? Just curious. My only feedback is implants above pectoral. Under for me was a nightmare. #bcsm
Alicia C. Staley @stales
@bridienixon @bridienixon check with @6state - she would be the best resource ---- #BCSM Terri - please see this question from @bridienixon
Dr. Kelly Shanahan @stage4kelly
@stales @DrAttai Hope to get the opportunity to educate the researchers, trial sponsors, etc about the importance of involving patients/advocates from the earliest stages - conception through inception and beyond #bcsm
Kathy Gori @kathygori
Hey there all! 2x bc’er here checking in from cold cold cold Northern Ca 🍷country. #bcsm
Dr. Deanna Attai @DrAttai
#bcsm I'm sure @6state can give you some advice, Terri's blog here: https://t.co/oU21ntCPBd #bcsm
Hillary Stires, PhD @HillStirSci
@AlisonObrPhD @stales @Lombardi @itsnot_pink @RutgersBHS Hi friend!!! #bcsm
Alicia C. Staley @stales
@lindafrembes Any thoughts here? Need help with new onc --->>>> RT @lindafrembes: My onco recently left the state to join a private practice. Any tips on searching for a new one after almost 5 years with my 1st doc? #bcsm
Alicia C. Staley @stales
@AlisonObrPhD @HillStirSci @Lombardi @itsnot_pink @RutgersBHS Welcome! #BCSM
Julia Maues @itsnot_pink
@stales Hi #bcsm! Julia in DC living with MBC. I’ll try to join in a little bit, still have an awake kid!
Dr. Deanna Attai @DrAttai
@lindafrembes you could check w/your surgeon or rad onc (if you did radiation) for suggestions, also breast imaging center if there is a nurse navigator might be of help #bcsm
Myeloma Teacher @MyelomaTeacher
RT @stales: What are the first words that come to mind when you think of a clinical trial? Any thoughts? #BCSM #LCSM #GYNSCM #MMSM #BTSM #…
Social✽Fly @socflyny
@DrAttai @ESchattner @NPR Great job Elaine -- very powerful. #bcsm
Emily Garnett @emrgarnett
@itsnot_pink @stales So do I! #bcsm (although he's *supposed* to be in bed...)
Shaalan Beg @ShaalanBeg
RT @DrAttai: How a doctor chose her last doctor - @docraina describing how @UzmaMD chose her palliative care and hospice team (it shouldn't…
Social✽Fly @socflyny
Powerful. #StageIVNeedsMore #bcsm #MetsMonday
Linda Frembes @lindafrembes
@DrAttai Thank you! #bcsm
Alicia C. Staley @stales
@emrgarnett @itsnot_pink Stop by anytime! good luck! #BCSM
Dr. Deanna Attai @DrAttai
RT @stage4kelly: @stales @DrAttai Hope to get the opportunity to educate the researchers, trial sponsors, etc about the importance of invol…
Janice Radak @jantrad
RT @annepeledmd: Wondering where your #lumpectomy scars will be? In nearly all cases (and for removal of benign lumps too!), scars can be…
Babyf8ce @Shalisa_Renee
RT @CDC_Cancer: Breast cancer screenings can find breast cancer early, when it is easier to treat. When you need to get a mammogram: https:…
Social✽Fly @socflyny
@stales "Try the veal, I'll be here all week ..." ~ Alicia Staley 😁#bcsm https://t.co/r2ZI3ImVlN
Emily Garnett @emrgarnett
@socflyny @DrAttai @ESchattner @NPR Agreed - such an incredible piece. It was a huge honor to be a part of it. #bcsm
Dr. Kelly Shanahan @stage4kelly
I’m packing for my trip to India with @afreshchapter, cancer patients and caregivers volunteering with a cancer support organization in Delhi - just hope the snow stays away long enough for me to get to SF for my flight Thursday! #bcsm
Emily Garnett @emrgarnett
RT @socflyny: Powerful. #StageIVNeedsMore #bcsm #MetsMonday https://t.co/5nW4dxQHS6
Social✽Fly @socflyny
RT @DrAttai: always stress to pts to have old films for comparison if they have to change centers - False positive recalls less likely w/ t…
Kathy Gori @kathygori
@socflyny @stales Don’t forget to tip your waiter #bcsm
Victoria K @ChefGeib
Hi all! This is Tori from Ohio! #MBC Patient and Advocate #bcsm
it doesn't matter... @stevecripe57
RT @findlungcancer: Primary Care Docs Ambivalent About Cancer Decisions | Medpage Today #bcsm@coffeemommy⁩ ⁦@MightyCaseyhttps://t.co/e…
Emily Garnett @emrgarnett
anyone had a MBC tumor mutation from HR+ to way less hormone sensitive? #BCSM
Dr. Kelly Shanahan @stage4kelly
@emrgarnett @socflyny @DrAttai @ESchattner @NPR Were you one of the models Emily? Absolutely amazing and powerful!! #bcsm
Apoorve Nayyar @apoorvenayyar
RT @DrAttai: "Not letting it define us" - @ESchattner @NPR covers #Cancerland - a different kind of #NYFW runway show https://t.co/wGENb82K…
Dr. Deanna Attai @DrAttai
@lindafrembes also if onc was in a group practice may want to try one of his/her partners first. It may take a while to find the right fit #bcsm
Dr. Aimee Zadak @DrAimeeZadak
RT @BreastAdvocate: What factors helped you decide preventative #mastectomy was the best choice for you? #breastcancer #bcsm #BRCA https:/…
Leslie @wwleslie
Sorry to be late I’ve got a kiddo with ear infection. I’m a 3 yr Her2 positive IDC and DCIS survivor. Hello all! #bcsm
Alicia C. Staley @stales
@wwleslie hi there #bcsm
Alicia C. Staley @stales
@ChefGeib hello, hello #bcsm
Emily Garnett @emrgarnett
@stage4kelly @socflyny @DrAttai @ESchattner @NPR I was!!! It was just unbelievably incredible and empowering. #bcsm (I was in the @empowerhausco 1 in 3 tee)
Alicia C. Staley @stales
@kathygori @socflyny LOLOLOLOLOLOL #BCSM
Christina Lizaso @btrfly12
RT @DrAttai: "Not letting it define us" - @ESchattner @NPR covers #Cancerland - a different kind of #NYFW runway show https://t.co/wGENb82K…
Leslie @wwleslie
Btw you usually know me on my other account. I offered to buy the 1st round of drinks today! #bcsm
Alicia C. Staley @stales
Can anyone provide some insights here? @MBC_Project @MBCNbuzz #BCSM
IBC Research Fdn @IBCResearch
@stage4kelly @afreshchapter Will be thinking of you and all the others going to India! Want to hear all about it when you return ❤️ Give a hug to @terriwingham @afreshchapter #bcsm
Emily Garnett @emrgarnett
@stage4kelly @afreshchapter Fingers crossed for you, that sounds like an amazing, and much needed refresh after such intense advocacy #bcsm
Liza Bernstein @itsthebunk
RT @IBCResearch: @stage4kelly @afreshchapter Will be thinking of you and all the others going to India! Want to hear all about it when you…
Liza Bernstein @itsthebunk
@IBCResearch @stage4kelly @afreshchapter @terriwingham YES, this!! #bcsm
Dr. Deanna Attai @DrAttai
@emrgarnett that's not uncommon - tumor essentially "loses" the receptor - important that mets be tested as they may be different subtype from the original lesion #bcsm
Emily Garnett @emrgarnett
@ChefGeib hi Tori! Thank you for all of the fantastic advocacy work you do. #bcsm
IBC Research Fdn @IBCResearch
@itsnot_pink @stales Big hug to you Julia! Looking forward to seeing you before too long!! #bcsm
Leslie @wwleslie
@DrAttai @emrgarnett I never knew this. #bcsm
Alicia C. Staley @stales
@wwleslie LOLOL drinks for everyone #bcsm
Victoria K @ChefGeib
@emrgarnett Thank you @emrgarnett 💙 You rocked the #NYFW Show! #bcsm
Jamie Holloway, PhD @jamienholloway
@stales @MBC_Project @MBCNbuzz Unfortunately, endocrine resistance is a big problem in HR+ MBC. So the "good" news is that your onc should have some experience there... #BCSM
Emily Garnett @emrgarnett
@stage4kelly @DrAttai @stales I've been working on this as well. Possibly giving a talk in April to a group of Radiologists, and looking forward to being able to bridge the gap between the patient and medical communities #bcsm
Leslie @wwleslie
Question...do we ever “grow out of” our long term chemo side effects? #bcsm
IBC Research Fdn @IBCResearch
Anyone going to @YSCBuzz Summit in Austin March 8-10? We'll be exhibiting there, so stop by and say hi if you're there! #bcsm
Dr. Kelly Shanahan @stage4kelly
@stales @MBC_Project @MBCNbuzz Certainly lots of people have their receptor status change with mets, just not me personally. I do have one friend who has each of the 3 major subtypes in 3 different organs. #bcsm
Alicia C. Staley @stales
RT @emrgarnett: @stage4kelly @DrAttai @stales I've been working on this as well. Possibly giving a talk in April to a group of Radiologists…
Dr. Deanna Attai @DrAttai
@wwleslie @emrgarnett When it happens usually goes ER+ -> neg or Her2+ -> neg - obviously can have big implications for treatment #bcsm
Alicia C. Staley @stales
RT @stage4kelly: @stales @MBC_Project @MBCNbuzz Certainly lots of people have their receptor status change with mets, just not me personall…
Alicia C. Staley @stales
RT @jamienholloway: @stales @MBC_Project @MBCNbuzz Unfortunately, endocrine resistance is a big problem in HR+ MBC. So the "good" news is t…
Emily Garnett @emrgarnett
@stales possible placebo. Although I'm currently in a trial and there's no placebo trial (its stage Ib and a dosing stage). So much to learn about how trials work. #bcsm
z @zebrafinch
RT @DrAttai: thread -> @ETSshow podcast w/his wife Jessica discussing her breast cancer experience #bcsm https://t.co/iw0WFvbqZG
Alicia C. Staley @stales
RT @emrgarnett: @stales possible placebo. Although I'm currently in a trial and there's no placebo trial (its stage Ib and a dosing stage).…
Leslie @wwleslie
@DrAttai @emrgarnett For sure! That would be very different. #bcsm
Liza Bernstein @itsthebunk
RT @wwleslie: Question...do we ever “grow out of” our long term chemo side effects? #bcsm
Jamie Holloway, PhD @jamienholloway
@stales @MBC_Project @MBCNbuzz And while sometimes different lesions will have different HR expression, sometimes even with ER expression tumors can become resistant to hormonal therapy. #BCSM
IBC Research Fdn @IBCResearch
@wwleslie I'm coming up on 25 yr from diagnosis and continue to have #chemobrain issues, have developed #cardiac problems and bones are a mess. Grateful to be here but living with #colateraldamage for sure #bcsm
Victoria K @ChefGeib
@IBCResearch @YSCBuzz I wish! It’s actually the same weekend as @KomenNEOhio ‘s MBC Symposium. These next couple months are going to be crazy busy #bcsm
Dr. Deanna Attai @DrAttai
@wwleslie a huge "it depends"... thoughts from the group? #bcsm
Dr. Deanna Attai @DrAttai
RT @jamienholloway: @stales @MBC_Project @MBCNbuzz And while sometimes different lesions will have different HR expression, sometimes even…
Liza Bernstein @itsthebunk
@wwleslie I think it is different for everybody... I think I "grew out" of all (?) or most/many of them, but I have found they can be re-ignited/triggered by circumstances... And then there are other mysterious long term effects that seem permanent. :( #bcsm
Dr. Kelly Shanahan @stage4kelly
@emrgarnett @stales In oncology trials no one gets only a placebo - always get SOC at least. Can be SOC + new drug or SOC with placebo or comparison of SOC vs new drug. #bcsm
Hillary Stires, PhD @HillStirSci
@DrAttai @emrgarnett It’s about 20-25% of ER+ breast cancer. Mutations are largely random. We think the ones that “stick” help the cancer grow. When an anti-estrogen is on board, cells with normal ER don’t grow, so if there is a mutation, they grow out instead. #bcsm https://t.co/ff6VyAHefa
Liza Bernstein @itsthebunk
RT @IBCResearch: @wwleslie I'm coming up on 25 yr from diagnosis and continue to have #chemobrain issues, have developed #cardiac problems…
Alicia C. Staley @stales
RT @stage4kelly: @emrgarnett @stales In oncology trials no one gets only a placebo - always get SOC at least. Can be SOC + new drug or SOC…
Alicia C. Staley @stales
RT @jamienholloway: @stales @MBC_Project @MBCNbuzz And while sometimes different lesions will have different HR expression, sometimes even…
Katsuaki Mehara Ph.D @BlueApple500816
RT @matteolambe: Published in @BCRJournal the study by @bastien_nguyen (@c_sotiriou's lab) et al. (previously presented at #SABCS18) showin…
Mary L Gorden @marylgorden
@wwleslie #bcsm probably never lose the tendency to have scanxiety
Liza Bernstein @itsthebunk
@IBCResearch @wwleslie Yep. Hugs, Ginny. #CollateralDamage is the perfect term to describe it. #bcsm
Alicia C. Staley @stales
Anyone going? RT @IBCResearch: Anyone going to @YSCBuzz Summit in Austin March 8-10? We'll be exhibiting there, stop by and say hi #bcsm
Liza Bernstein @itsthebunk
RT @DrAttai: @wwleslie a huge "it depends"... thoughts from the group? #bcsm
Hillary Stires, PhD @HillStirSci
@DrAttai @emrgarnett P.S. ESR1 and ER are both estrogen receptor. ESR1 is the code for the gene while ER designates the protein. #bcsm
Leslie @wwleslie
@IBCResearch So 2 yrs post chemo I shouldn’t expect this to be gone yet. #bcsm
Victoria K @ChefGeib
RT @stage4kelly: @emrgarnett @stales In oncology trials no one gets only a placebo - always get SOC at least. Can be SOC + new drug or SOC…
Liza Bernstein @itsthebunk
RT @stales: Anyone going? RT @IBCResearch: Anyone going to @YSCBuzz Summit in Austin March 8-10? We'll be exhibiting there, stop by and say…
Leslie @wwleslie
@itsthebunk @IBCResearch Yes that really defines it. And friends who were there during the initial crisis aren’t always there for the #collateraldamage. #bcsm
Gary L. Thompson @garyleethompson
Checking in late #bcsm friends. Our vestry meeting just ended. 🙏🏻🙏🏻
Howard Karpoff @doctorkarpoff
RT @HillStirSci: @DrAttai @emrgarnett P.S. ESR1 and ER are both estrogen receptor. ESR1 is the code for the gene while ER designates the pr…
Liza Bernstein @itsthebunk
@wwleslie @IBCResearch YES! So true... the slow long slog of recovery is not "fun" for those who wish we were "better already" or, "back to normal" (ha!) #bcsm
Leslie @wwleslie
@itsthebunk I want my old digestive system back. I have not been able to eat my normal menu since chemo. Most things I got back, but some cause terrible problems ever since. If I could magically change things-that’s the side effect I’d get rid of. (First) #bcsm
patty spears @paspears88
@StoverLab Hi @StoverLab been wanting to ask... re PANACEA... small study... 15% OR in PD-L1pos... doesn't look that great (to me).... I saw lots of positive tweets about it though... is the bar for br ca IO really that low? Educate us!! #bcsm
Dr. Deanna Attai @DrAttai
#bcsm vocab lesson - SOC = standard of care
Jamie Holloway, PhD @jamienholloway
@wwleslie @IBCResearch Some lessen with time. Some don't. Always worth asking your oncologist if there is away to help. #BCSM
Jamie Holloway, PhD @jamienholloway
@wwleslie @IBCResearch (i.e., working with a speech pathologist can really help with chemo brain!) #bcsm
Rod Ritchie @malefitness
Interesting read. #bcsm
Gary L. Thompson @garyleethompson
I’ll be there!! This one is close. Like backyard!! #bcsm
Dr. Deanna Attai @DrAttai
RT @HillStirSci: @DrAttai @emrgarnett It’s about 20-25% of ER+ breast cancer. Mutations are largely random. We think the ones that “stick”…
Social✽Fly @socflyny
@emrgarnett @DrAttai @ESchattner @NPR I'd love to connect with you offline about some of the details/sponsors if you'd be open to that, Emily. #bcsm
Liza Bernstein @itsthebunk
@wwleslie Oh no :( I haven't heard of this long term side effect. #bcsm
Liza Bernstein @itsthebunk
RT @jamienholloway: @wwleslie @IBCResearch Some lessen with time. Some don't. Always worth asking your oncologist if there is away to help…
Liza Bernstein @itsthebunk
RT @jamienholloway: @wwleslie @IBCResearch (i.e., working with a speech pathologist can really help with chemo brain!) #bcsm
Leslie @wwleslie
@jamienholloway @IBCResearch He says no. He also thinks Tamoxifen doesn’t cause fatigue or sexual side effects, so.... He’s good at treating the cancer, but not the side effects of hormone treatment. #bcsm
Liza Bernstein @itsthebunk
@jamienholloway @wwleslie @IBCResearch Wow, never heard of this possible solution before! That's why this network we have is so powerful! #bcsm
Katherine OBrien @ihatebreastcanc
@stales @IBCResearch @YSCBuzz @mbcnbuzz and @christeeny513 will be there on behalf of the @mbcalliance @MetastaticOdds will be there too #bcsm #mbcconnect
Jamie Holloway, PhD @jamienholloway
@itsthebunk @wwleslie @IBCResearch Several friends have found it SO helpful. Simple steps have made a big difference. #bcsm
Alicia C. Staley @stales
RT @ihatebreastcanc: @stales @IBCResearch @YSCBuzz @mbcnbuzz and @christeeny513 will be there on behalf of the @mbcalliance @MetastaticOdds
Leslie @wwleslie
@itsthebunk One support group I’m on someone else posted about it and so many women chimed in! It’s like we all thought we were alone but really we were united with this. We all had different things we could no longer eat but the pattern was the same for all of us. #bcsm
Liza Bernstein @itsthebunk
RT @jamienholloway: @itsthebunk @wwleslie @IBCResearch Several friends have found it SO helpful. Simple steps have made a big difference. #…
Liza Bernstein @itsthebunk
RT @wwleslie: @itsthebunk One support group I’m on someone else posted about it and so many women chimed in! It’s like we all thought we we…
Stephanie Graff, MD, FACP @DrSGraff
@HillStirSci @DrAttai @emrgarnett I would add that a decrease in number (ER 99% to ER 38%) is still ER+ breast cancer and treatment may continue to focus on ER pathways like PI3K or mTOR to overcome emerging resistance. #bcsm
Emily Garnett @emrgarnett
@HillStirSci @DrAttai This is so helpful and interesting. Although still frustrating to think about from a treatment/longetivity standpoint. We still have such a long ways to go, research-wise. #bcsm
Liza Bernstein @itsthebunk
@wwleslie @jamienholloway @IBCResearch Ummm, Tamoxifen doesn't cause fatigue???????? That was not my experience... it's a known side effect! #bcsm
Leslie @wwleslie
@jamienholloway @itsthebunk @IBCResearch This is why I love support groups-and online support. Only those of us who have been through it know what it’s all like. We have ideas to share and support to give. The club no one ever wanted to be part of! #bcsm
Hillary Stires, PhD @HillStirSci
@emrgarnett @DrAttai Working on it! ❤️❤️ #bcsm
Myeloma Teacher @MyelomaTeacher
Really??? I think I'll schedule an appointment in the morning! #BCSM #MMSM
Liza Bernstein @itsthebunk
RT @wwleslie: @jamienholloway @itsthebunk @IBCResearch This is why I love support groups-and online support. Only those of us who have been…
Leslie @wwleslie
@itsthebunk @jamienholloway @IBCResearch Yeah. That’s my point. Love my onc, but sometimes as to the management of side effects, he’s just wrong. I have a great onc therapist though who is very helpful. #bcsm
Julia Maues @itsnot_pink
@stales @emrgarnett Made it! What are we talking about? #bcsm
Alicia C. Staley @stales
RT @IBCResearch: @wwleslie I'm coming up on 25 yr from diagnosis and continue to have #chemobrain issues, have developed #cardiac problems…
Alicia C. Staley @stales
RT @jamienholloway: @wwleslie @IBCResearch (i.e., working with a speech pathologist can really help with chemo brain!) #bcsm
Emily Garnett @emrgarnett
@DrAttai agreed - I'm currently in a clinical trial, and as part of the trial they are doing a bone biopsy - I had one in dec. 2017, one in jan. 2019, and a third last week. #bcsm
Alicia C. Staley @stales
RT @jamienholloway: @itsthebunk @wwleslie @IBCResearch Several friends have found it SO helpful. Simple steps have made a big difference. #…
Alicia C. Staley @stales
RT @wwleslie: @jamienholloway @itsthebunk @IBCResearch This is why I love support groups-and online support. Only those of us who have been…
Alicia C. Staley @stales
@jamienholloway @itsthebunk @wwleslie @IBCResearch Never heard of this !! #bcsm
Emily Garnett @emrgarnett
@DrSGraff @HillStirSci @DrAttai yes - Although mine dropped to 2% which is not a lot of estrogen receptors. I'm going to hopefully talk to my oncologist this/next week and game plan. #bcsm
Alicia C. Staley @stales
@itsnot_pink @emrgarnett It's open mic night - topic is anything you want to talk about. Question for #BCSM - just send it out!
SPECFORD59 @SPECFORD59
@jamienholloway @wwleslie @IBCResearch Fascinating idea. Not to doubt you one bit but has this been studied? #BCSM
Hillary Stires, PhD @HillStirSci
@DrSGraff @DrAttai @emrgarnett Thanks @DrSGraff, good call! Moving between endocrine therapies can help too. There’s some work on better ER targeted therapies including oral biosimilars to Faslodex. And we can’t forget the ciclibs aka the CDK4/6 inhibitors! #bcsm
Stephanie Graff, MD, FACP @DrSGraff
@emrgarnett @HillStirSci @DrAttai Markers can also be unreliable on bone biopsies FWIW. #Bcsm
Jack Warner @JackWarner16
RT @malefitness: Now five years since the start of treatment. Five years wiser about this disease that I now know men can get too. NED. #bc
Leslie @wwleslie
@stales @itsnot_pink @emrgarnett Someone reached out a grabbed my “foobs” last week. Without asking. In public. Didn’t believe they were fake. On the bright side-she told me they felt real to her, so.... 😂 #bcsm
Liza Bernstein @itsthebunk
@marylgorden @wwleslie @jamienholloway @IBCResearch I am assuming it is a psychologist/therapist who specializes in oncology/cancer patients. I had one and it made a huge difference. #bcsm
Jamie Holloway, PhD @jamienholloway
@SPECFORD59 @wwleslie @IBCResearch That I don't know. But several people in my group have gone-- one in our community hospital, one in the military medical system. They had an initial assessment followed by an intervention plan. #bcsm
Dr. Deanna Attai @DrAttai
@wwleslie @stales @itsnot_pink @emrgarnett what the... #bcsm
Joan Mancuso @2020VisionGirl
RT @tmprowell: Looking forward to chairing a session at upcoming FDA-NBTS public workshop on drug dev for #brainmets & LMD. Ambitious agen…
Leslie @wwleslie
@marylgorden @itsthebunk @jamienholloway @IBCResearch Therapist who specializes with cancer patients and survivors. My cancer center offeres it. #bcsm
Myeloma Teacher @MyelomaTeacher
@jamienholloway @wwleslie @IBCResearch This makes sense. Many of the symptoms I am experiencing r the same as the LD students I taught. Speech therapy was always part of the IEP- for language processing, not articulation #BCSM #MMSM
Liza Bernstein @itsthebunk
Question for open mic night: what's the deal with early onset osteoporosis/osteopenia as a result of chemo/endocrine therapy/loss of estrogen due to premature menopause etc? #bcsm
Leslie @wwleslie
@DrAttai @stales @itsnot_pink @emrgarnett Gotta laugh it off. Laugh or cry seem to be my options to deal with things that bother me. I choose laugh for this one. #bcsm
YAG Foundation @FoundationYag
RT @CDC_Cancer: Breast cancer screenings can find breast cancer early, when it is easier to treat. When you need to get a mammogram: https:…
Gary L. Thompson @garyleethompson
@stage4kelly This makes me happy to know you will soon be with dear friend @terriwingham and @afreshchapter in India!! #bcsm
Emily Garnett @emrgarnett
@DrSGraff @HillStirSci @DrAttai that is good to know! *retreats from downward panic spiral* #bcsm
Stephanie Graff, MD, FACP @DrSGraff
@jamienholloway @wwleslie @IBCResearch I refer for this regularly. Also PT/OT. I get resistance from patients—they think I’m dismissing them—but then it gets better and they are all “wow that worked!” #bcsm
Leslie @wwleslie
@itsthebunk @marylgorden @jamienholloway @IBCResearch Yes #bcsm
Liza Bernstein @itsthebunk
@wwleslie @stales @itsnot_pink @emrgarnett WHAAAT? Excuse me?????? #bcsm
Mary L Gorden @marylgorden
@itsthebunk @wwleslie @jamienholloway @IBCResearch #bcsm Thanks sounds like help I could have used
SPECFORD59 @SPECFORD59
@itsthebunk @marylgorden @wwleslie @jamienholloway @IBCResearch I asked on an earlier chat if there was an organization of oncology trained psychology/ counselor peoples. Is there such? #bcsm
Liza Bernstein @itsthebunk
@DrSGraff @jamienholloway @wwleslie @IBCResearch Sounds good! What types of symptoms do you refer patients to PT/OT for? #bcsm
Emily Garnett @emrgarnett
@HillStirSci @DrSGraff @DrAttai I'm on a trial for that right now! It's been a dream drug - zero side effects. Honestly amazing. I progressed off Palbo in december, and scans for the clinical trial are next week so fingers crossed it's working. #bcsm
Julia Maues @itsnot_pink
How awesome is it that the NYFW show by @AnaOnoIntimates with just MBC patients as models made it to @NPR with a great article by @ESchattner?! Plus all proceeds went to @metavivor, totaling over $100k! https://t.co/z47Uqt8WzC #bcsm
Gary L. Thompson @garyleethompson
Not sure if I have shared #TheLoveofMyLife | From The Heart with #bcsm but with some new folks here and it being open mic night, seems appropriate. Recorded less than 6 months after Maureen's passing on 10.21.2014 https://t.co/m7ZHrL4z9S
Leslie @wwleslie
@itsthebunk @stales @itsnot_pink @emrgarnett 🎶Reach out and touch....somebody’s..... 😂🤣😂#bcsm
Hillary Stires, PhD @HillStirSci
@emrgarnett @DrSGraff @DrAttai 🤞🏼🤞🏼🤞🏼 sending so many good vibes for that! ❤️❤️ #bcsm
Leslie @wwleslie
@SPECFORD59 @itsthebunk @marylgorden @jamienholloway @IBCResearch I can ask her and report back. #bcsm
Liza Bernstein @itsthebunk
@marylgorden @wwleslie @jamienholloway @IBCResearch I would argue that it is never too late! #bcsm
Jamie Holloway, PhD @jamienholloway
@SPECFORD59 @itsthebunk @marylgorden @wwleslie @IBCResearch Many cancer centers have a social worker as part of their program. Also other centers that have services for cancer patients have them. Not sure if there is a national organization. #bcsm
Joe G @JNG1925
RT @MDAndersonNews: An accurate diagnosis is the first — and most critical — step in seeking cancer treatment. Our Dr. Lavinia Middleton…
Dr. Deanna Attai @DrAttai
@SPECFORD59 @itsthebunk @marylgorden @wwleslie @jamienholloway @IBCResearch good question, don't know of one, and have a hard time finding oncology trained psychologists for pts #bcsm
Emily Garnett @emrgarnett
@itsnot_pink @stales welcome!!!! (mine is still wandering around upstairs, but isn't yelling any more..) #bcsm Just talking about my saga of estrogen sensitivity. So much good knowledge from @HillStirSci and @DrAttai
Leslie @wwleslie
@itsthebunk @marylgorden @jamienholloway @IBCResearch I think it’s incredibly helpful. I’m working on body image issues with her right now. #bcsm
Emily Garnett @emrgarnett
@itsnot_pink @stales and @DrSGraff !!! #bcsm
Katherine OBrien @ihatebreastcanc
@DrSGraff @emrgarnett @HillStirSci @DrAttai @mbcnbuzz Shirley Mertz had a metastatic recurrence to liver and spine in 2003...her former oncologist didn’t biopsy the new tumor(s) and treated her early stage subtype...but the recurrence was HER2+ https://t.co/DRLh3Rnce1 #secondopinionscansavelives #bcsm https://t.co/WblOklrSJk
Jamie Holloway, PhD @jamienholloway
@itsnot_pink @AnaOnoIntimates @NPR @ESchattner @metavivor Great show! I could see @ESchattner sitting on the front row taking notes for this article! Excellent piece, Elaine! #bcsm
Emily Garnett @emrgarnett
@HillStirSci @DrSGraff @DrAttai TY!!!!!!!! #BCSM
Kellie @LehrKellie
RT @itsnot_pink: How awesome is it that the NYFW show by @AnaOnoIntimates with just MBC patients as models made it to @NPR with a great art…
Enlightening Results @GraceCordovano
Hi #bcsm friends! Curious if anyone had any thoughts on this report on self-compression during mammograms? Thinking of trying this at my next one. https://t.co/22wrIz6QWj #bcsm
Liza Bernstein @itsthebunk
@jamienholloway @SPECFORD59 @marylgorden @wwleslie @IBCResearch I googled and found this https://t.co/52OLntXjMm and https://t.co/X8fNKVIdHb among others... #psychooncology #bcsm
Emily Garnett @emrgarnett
@ihatebreastcanc @DrSGraff @HillStirSci @DrAttai @MBCNbuzz I have to say, that's one of the things i love most about my onc at @sloan_kettering - she is so thorough. She was my second opinion, and pushed for a biopsy of the bone metastases. #bcsm
Stephanie Graff, MD, FACP @DrSGraff
@itsthebunk @jamienholloway @wwleslie @IBCResearch Difficulty concentrating, fatigue, drowsiness, decline in executive function, word finding, neuropathy...uh, everything actually #bcsm
Liza Bernstein @itsthebunk
RT @wwleslie: @itsthebunk @marylgorden @jamienholloway @IBCResearch I think it’s incredibly helpful. I’m working on body image issues with…
Dr. Deanna Attai @DrAttai
@GraceCordovano my suggestion is check w/the facility ahead of time to let them know your preference - not sure this is widespread practice #bcsm
Liza Bernstein @itsthebunk
RT @jamienholloway: @SPECFORD59 @itsthebunk @marylgorden @wwleslie @IBCResearch Many cancer centers have a social worker as part of their p…
Myeloma Teacher @MyelomaTeacher
@SPECFORD59 @itsthebunk @marylgorden @wwleslie @jamienholloway @IBCResearch https://t.co/2b7W49XNVj #BCSM #MMSM
Liza Bernstein @itsthebunk
RT @DrSGraff: @itsthebunk @jamienholloway @wwleslie @IBCResearch Difficulty concentrating, fatigue, drowsiness, decline in executive functi…
Leslie @wwleslie
@DrSGraff @itsthebunk @jamienholloway @IBCResearch You’ve described me right there. #bcsm
Emily Garnett @emrgarnett
@itsnot_pink @stales @HillStirSci @DrAttai I'm not sure - going to talk to onc about it this week. I think 2% ER+ which is technically still ER+, but explains december's progression. #bcsm
Liza Bernstein @itsthebunk
@DrSGraff @jamienholloway @wwleslie @IBCResearch Wow - I could have used the help/referral! #bcsm
Mary L Gorden @marylgorden
@jamienholloway @SPECFORD59 @itsthebunk @wwleslie @IBCResearch #bcsm Both my med onc and rad onc had a SW that were helpful
Myeloma Teacher @MyelomaTeacher
@DrSGraff @itsthebunk @jamienholloway @wwleslie @IBCResearch Do you know if these services are covered by Medicare? #BCSM #MMSM
Dr. Deanna Attai @DrAttai
RT @DrAttai: A great listen - @ETSshow podcast w/ Mark and his wife Jessica on her breast cancer experience https://t.co/gzIzI7YFvi #bcsm #…
TwitLiveEvents @TwitLiveEvents
February 18, 2019 at 10:00PM Twitter Chat - #BCSM #TwitterChat Visit https://t.co/7rW7B93fzz for more events.
Emily Garnett @emrgarnett
RT @itsnot_pink: How awesome is it that the NYFW show by @AnaOnoIntimates with just MBC patients as models made it to @NPR with a great art…
Dr. Deanna Attai @DrAttai
good night everyone #bcsm
Emily Garnett @emrgarnett
RT @jamienholloway: @itsnot_pink @AnaOnoIntimates @NPR @ESchattner @metavivor Great show! I could see @ESchattner sitting on the front row…
Social✽Fly @socflyny
@stales @IBCResearch @YSCBuzz No, but I would love to get there! (Alicia, see your DM -- interesting timing) #bcsm
Jamie Holloway, PhD @jamienholloway
Night, kids. Loads of laundry are calling my name. Miles to go before I sleep... ;) See you next week! #bcsm
Alicia C. Staley @stales
Good night everyone! so nice to see you. Look forward to these chats. #bcsm
Katherine OBrien @ihatebreastcanc
@emrgarnett @DrSGraff @HillStirSci @DrAttai @MBCNbuzz @sloan_kettering Shirley will tell you that her experience prompted her to urge newly diagnosed MBC patients to get checked out a comprehensive cancer center we are fortunate Chicago is home to several including two @NCCNnews facilities #bcsm
Robert L. Hill, MD @harmonigenic
RT @itsnot_pink: How awesome is it that the NYFW show by @AnaOnoIntimates with just MBC patients as models made it to @NPR with a great art…
Alicia C. Staley @stales
Good night moon! PS TOMORROW IS A SUPER MOON - get out there and look up tomorrow night #bcsm
Enlightening Results @GraceCordovano
@DrAttai I absolutely will and will report back. Thank you! #bcsm
Liza Bernstein @itsthebunk
RT @stales: Good night everyone! so nice to see you. Look forward to these chats. #bcsm
Liza Bernstein @itsthebunk
Is it really 7 pm? This hour went by fast! I gotta log off. Goodnight and thanks to all! Have a great week everybody! #bcsm
Emily Garnett @emrgarnett
@ihatebreastcanc @DrSGraff @HillStirSci @DrAttai @MBCNbuzz @sloan_kettering @NCCNnews I couldn't agree more. #bcsm
Alicia C. Staley @stales
Good night party tweeps!! xoxo #bcsm
SPECFORD59 @SPECFORD59
@jamienholloway @itsthebunk @marylgorden @wwleslie @IBCResearch Many patients live outside metropolitan areas. There are LMHP’s in many small towns. I could see a need for a training curriculum to augment their well established psychology knowledge. #bcsm
Hillary Stires, PhD @HillStirSci
@stales 🌙❤️ #bcsm
Social✽Fly @socflyny
@stales A parting gift -- Stumbled upon a BRILLIANT (and free!) podcast hosted by @ErinLCummings on @Castbox_fm Kappa Kappa Cancer https://t.co/wsunG1diPx Subscribe now! You won't be sorry! (If anyone can make an intro, I'm on a mission to connect with Erin & Castbox!) #bcsm #OurTribe
Katherine OBrien @ihatebreastcanc
RT @emrgarnett: @ihatebreastcanc @DrSGraff @HillStirSci @DrAttai @MBCNbuzz @sloan_kettering @NCCNnews I couldn't agree more. #bcsm
Nikhil Wagle, MD @Nikhilwagle
@emrgarnett In about 10% of patients, breast cancer that was ER+ at diagnosis becomes ER- in the metastatic setting. We have a number of studies going on right now to understand why this happens & what it means. But it is an important consideration for endocrine resistance in #mbc #bcsm
Emily Garnett @emrgarnett
@socflyny @stales @IBCResearch @YSCBuzz I'll be there! #bcsm
Frank Ingram, MD @Chucktowndoc
Good night, all. #BCSM
Stephanie Graff, MD, FACP @DrSGraff
Good night friends. #bcsm
Hillary Stires, PhD @HillStirSci
@emrgarnett @ihatebreastcanc @DrSGraff @DrAttai @MBCNbuzz @sloan_kettering @NCCNnews Same here. #bcsm
IBC Research Fdn @IBCResearch
Nothing like that was available or even discussed 20 yr ago and even now, many of those services would be out of pocket for many limiting access, sadly #bcsm
Hillary Stires, PhD @HillStirSci
@Nikhilwagle @emrgarnett Thanks, Nik! Do we also now call it TNBC? Or is it just that treatments change? #bcsm
Linda Frembes @lindafrembes
Thanks for the chat and info, #bcsm-ers! Good night, all.
Emily Garnett @emrgarnett
@Nikhilwagle It's SO important for research. I'd love to know more about the current research, especially as I'm dealing with the start of endocrine resistance myself. #bcsm
Kathy Gori @kathygori
Good evening all, have an almond milk latte and a scotch shortbread on me. #bcsm https://t.co/8P0IiDonHO
Kathy Gori @kathygori
@socflyny @stales Hahahaha! #bcsm
Katherine OBrien @ihatebreastcanc
@HillStirSci @emrgarnett @DrSGraff @DrAttai @MBCNbuzz @sloan_kettering @NCCNnews I learned the hard way.... https://t.co/mNN59nbexp #bcsm
IBC Research Fdn @IBCResearch
Interesting conversations! Hope everyone has a good week...safe travels @stage4kelly Stay warm and cozy! #bcsm
Social✽Fly @socflyny
@emrgarnett @stales @IBCResearch @YSCBuzz Emily, I'd love to connect with you offline re the fashion show if you have a few minutes? Let me know. 🙂#bcsm
AHLAM ❤️ @missdream2424
RT @Breastcancerorg: What is hormonal therapy and is it right for you? We break down the different types, common side effects, and what to…
Rod Ritchie @malefitness
@stales Tonight here in Australia for the super moon. #bcsm
Dr. Aislinn Vaughan @aislinnvaughan
RT @HillStirSci: @DrAttai @emrgarnett It’s about 20-25% of ER+ breast cancer. Mutations are largely random. We think the ones that “stick”…
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