Marina MednikVaksman

Registered Dietitian, #Lifer and #MBC patient advocate. Diagnosed with metastatic breast cancer at 32. #Stage4NeedsMore

[Marina MednikVaksman @aMusingMarina]

How You Can Help Save 8 Million+ Lives per Year https://t.co/BUnJ8TE23J

[Susan Rahn @Stickit2Stage4]

Dear Early Stage #breastcancer Folkz

We get how y'all want to talk abt early detection & mammograms -HOWTHEFUCKEVER - That's not going to save lives. Sorry if that ”triggers” some of you but try being told ur Stage4 out the gate & not knowing a damn thing abt #metastaticcancer

[Jame Abraham, MD, FACP @jamecancerdoc]

How Research Is Failing Women With Metastatic #breastcancer | ⁦@metavivor⁩ ⁦@METUPorg⁩ ⁦@MBCNbuzz⁩ fascinating article, we need to refocus on #metastaticcancer #bcsm ⁦@TIME⁩ https://t.co/osZuMmLAYB

[Dr. Kelly Shanahan @stage4kelly]

It doesn’t matter if the person with cancer is married/in a relationship/single/a virgin/straight/gay/wants kids/doesn’t want kids/not sure fertility preservation should be discussed! And this applies to sperm banking for young men with cancer!

[Dr. Kelly Shanahan @stage4kelly]

Which brings me to soapbox #347: every advanced/metastatic cancer patient should have NGS, if not to decide on a treatment for that individual then to inform the direction of future research. #6thMBCC

[Crazy Cancer Lady @CrazyCancerLady]

The BC awareness slogan ‘Save The Tatas’ makes no sense to me. The only breast cancer patients whose “tatas” are saved are those who are de novo stage 4 because it’s already metastatic & therefore too late for surgery. Yay, I’m going to die but at least my breasts are intact. 🙄

[Marina MednikVaksman @aMusingMarina]

@Diamondtrees11 I don't like the taste either, but I wouldn't want a bunch of lab-made chemicals coating my pills. My organs are already processing enough poison.

[Dr. Kelly Shanahan @stage4kelly]

Looking forward to today’s @ASCO & Friends of Cancer Research (FOCR) meeting on broadening eligibility criteria for cancer #clinicaltrials, focusing on washouts, prior lines of therapy, performance status, test intervals. There’s an advocate on every working group! #bcsm #lcsm

[Marina MednikVaksman @aMusingMarina]

*de novo

[Marina MednikVaksman @aMusingMarina]

Like @AMJohnston1315, I was diagnosed de movo metastatic. For me, the shocking diagnosis came at age 32. I had no "preventable" risk factors and tested negative for BC related genes. @Deadline2020 please devote more $$ to MetastaticBC research #bcsm #metastaticBC #MetsMonday

[Abigail Johnston @AMJohnston1315]

Hey @Deadline2020, I was diagnosed de novo metastatic at age 38 in 2017. Prevention is not the key for those with Mets like me. Research is. Don’t ignore stage four. #deadby2020 @METUPorg #metsmonday #stageivneedsmore #dyingforacure #dontignorestageiv #thoughtsofametastaticmom

[METUP @METUPorg]

Today on #MetsMonday we will honor past and present voices from our community. @CultPerfectMoms prediction of prevention not being enough rings true. Please don’t ignore us @Deadline2020. #deadby2020 #bcsm #metastaticBC

[Marina MednikVaksman @aMusingMarina]

The question assumes most docs have expertise and time to read all the research. That's not always the case, and all too often, patients with scientific or medical expertise are blocked from scientifically vetting info by paywalls or data only providers can access.

[Marina MednikVaksman @aMusingMarina]

What can we do to encourage the complex original work? Can orgs like @metavivor get enough funding to make a dent? This feels like a much greater science culture issue - how do we change it to encourage innovation?

[Katherine OBrien @ihatebreastcanc]

@SpiveySandra @LeonidasPlatan1 Makes you wonder if we get research predicated on what the researcher thought had a reasonable chance of being funded vs. original work that is either too complex for would be funders to grasp or will take so long to carry out that the researcher can’t afford the risk

[metaMartha @Martha__Carlson]

@ihatebreastcanc @SpiveySandra @LeonidasPlatan1 This is the stuff my close researcher friend talks about. You see the same thing with a very minor change funded, researched—usually by same team—& lauded as tho gd breaking. A sure bet gets the $$.

[Marina MednikVaksman @aMusingMarina]

@akknowles1 @T_Allen1998 @VPrasadMDMPH @MetastaticOdds @metavivor @mbcalliance @METUPorg @METUPUKorg I'm excited to be going! 🙏I'll be healthy enough to make the trip

[Marina MednikVaksman @aMusingMarina]

@MDAndersonNews Is this what it's like at other major cancer centers? Do they all limit the trial search for their patients to only their institution like @MDAndersonNews does? Any exceptions? I'd guess that it's not up to individual oncs but institutional expectations? #StageIVneedsMore

[Marina MednikVaksman @aMusingMarina]

After I'd become a pt at the Connally Breast Center @MDAndersonNews and progressed on one trial, I was told that a different dept handled Phase I trials & I needed a separate appt w/ an onc there before hearing about any MDAnderson ph1 trials, nevermind trials outside institution

[UT MD Anderson @UTMDAnderson]

@PinkRibbonRoad @itsnot_pink At MD Anderson, our doctors work with our patients to explore the clinical trial options that are best suited for them. If you’d like to learn more about clinical trial options, visit https://t.co/XPfhLQywQ9 or call 1-877-632-6789.

[Julia Maués @itsnot_pink]

As if these animals weren’t incredible enough, ELEPHANTS DON’T GET CANCER.

Elephants have 20 copies of gene p53, well known for its ability to fix damaged DNA, which can lead to cancer. Humans have only one.

Can we please find a way to be more like elephants?

[METUP @METUPorg]

It may be summer but #SABCS is just around the corner. We proudly announce the Phyllis Groskin MBC Activist Grant, created to help #MBC activists attend #SABCS19, the most attended conference devoted specifically to breast cancer #research. Apply: https://t.co/U0ZATUqMMz
#bcsm

[Marina MednikVaksman @aMusingMarina]

@Majormac1 @SpiveySandra @Deadline2020 @itsnot_pink 😮Really? They say that they're training advocates, but kick out some MBC advocates and don't include any MBC research in their program?

[Marina MednikVaksman @aMusingMarina]

@dbellina3 @tmprowell @FDAOncology @US_FDA @NIH Wonder what keeps the @US_FDA from updating? Is it simple resistance to change and believing that things are working well enough now? Is there resistance from indurstry or academia? Or is there lack of funding/staff to update anything at this point?