Registered Dietitian, #Lifer and #MBC patient advocate. Diagnosed with metastatic breast cancer at 32. #Stage4NeedsMore
Austin, TX
Joined April 2010
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Marina MednikVaksman retweeted
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
It's only the 7th of October and I'm already livid at the amount of early stage cancer patients I've seen saying how 'triggered' they are with people discussing #metastaticcancer.
Triggered.
Really?
WTF?
Try living with this disease and see how you feel then.
Marina MednikVaksman retweeted
How Research Is Failing Women With Metastatic #breastcancer | @metavivor @METUPorg @MBCNbuzz fascinating article, we need to refocus on #metastaticcancer #bcsm @TIME time.com/5689570/metastatic-…
Marina MednikVaksman retweeted
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!
Conclusions to @matteolambe presentation on “Fertility Preservation” at the #ESMO19 Patient advocacy track! @OncoAlert 🚨
Marina MednikVaksman retweeted
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
Marina MednikVaksman retweeted
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 retweeted
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
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 $$ to MetastaticBC research #bcsm #metastaticBC #MetsMonday
Hey @Deadline2020, I was diagnosed de novo metastatic at age 38 in 2017. Prevention is not the key for those with Mets like me. Research is. Don’t ignore stage four. #deadby2020 @METUPorg #metsmonday #stageivneedsmore #dyingforacure #dontignorestageiv #thoughtsofametastaticmom
Marina MednikVaksman retweeted
Today on #MetsMonday we will honor past and present voices from our community. @CultPerfectMoms prediction of prevention not being enough rings true. Please don’t ignore us @Deadline2020. #deadby2020 #bcsm #metastaticBC
The question assumes most docs have expertise and time to read all the research. That's not always the case, and all too often, patients with scientific or medical expertise are blocked from scientifically vetting info by paywalls or data only providers can access.
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What can we do to encourage the complex original work? Can orgs like @metavivor get enough funding to make a dent? This feels like a much greater science culture issue - how do we change it to encourage innovation?
Makes you wonder if we get research predicated on what the researcher thought had a reasonable chance of being funded vs. original work that is either too complex for would be funders to grasp or will take so long to carry out that the researcher can’t afford the risk
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Marina MednikVaksman retweeted
This is the stuff my close researcher friend talks about. You see the same thing with a very minor change funded, researched—usually by same team—& lauded as tho gd breaking. A sure bet gets the $$.
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
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 mdanderson.org/clinicaltrial… or call 1-877-632-6789.
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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 retweeted
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?
Marina MednikVaksman retweeted
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: forms.gle/jss55MsxuR4Gq24H9
#bcsm
Marina MednikVaksman retweeted
I would like to see a “post-trial” section added as part of a phase 4 trial design- if volunteer continues to respond after the conclusion of the phase 3 study, volunteer continues to receive study drug from the pharmaceutical company at no additional cost.
Marina MednikVaksman retweeted
No new meds come to market w/o trial participants. They aren’t compensated for participating, & they aren’t guaranteed free drug post-approval. (Me: This is not how you should treat any volunteer, let alone ppl on whom your entire business model depends) bit.ly/2J1zB1t
Promising discovery but 18months till clinical trials 😕 How can we cut this down to 6-12mon? An accelerated @NIH program for getting to Phase1 trials faster like the FDA's Accelerated Approval program? #stage4needsMore medicalxpress.com/news/2019-…
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