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
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
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 $$.
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
Marina MednikVaksman retweeted
Points/miles donation efforts are noble & good to solve short-term funding shortcomings. But involving advocates in research & conferences shouldn’t depend on donations of a few miles and points here & there. We need a sustainable, objective & fair process to fund advocate travel
Marina MednikVaksman retweeted
So as punishment for being a patient advocate receiving honoraria for work on peer review, I’ve been asked by Social Security to provide 8 years of documentation about this income to see if it now disqualifies me from receiving disability payments I have already received. – at Laguna Niguel, CA
Marina MednikVaksman retweeted
Agree! Clinical trial process needs to change to bring trials to patients. Why is it that doctors/scientists can’t seem to think outside the box? It’s like being in a rut, but the problem is solvable without compromising integrity.
Fantastic event highlighting one of the biggest problems slowing cancer research: the financial burden on a patient to travel to a #clinicaltrial. No patients? No new therapies. It’s that simple. @LazarexCF #cancersucks #makehopereal @BidenCancer
Marina MednikVaksman retweeted
We still don’t have a common name. “advanced?” “metastatic?” “stage IV?” No wonder people are confused about “late stage” “terminal” or whatever we call this cancer. #bcsm #metastastaticBC – at Huntington Beach, CA
Marina MednikVaksman retweeted
A provocative statement from a person living with #metastaticbreastcancer “if I’m paying $12,000 a month for treatment, I expect to be cured.” #bcsm @metavivor – at Huntington Beach, CA
Marina MednikVaksman retweeted
Thank you all for the nice messages of support. But know that I’m not amazing or strong. I’m just living the cards I have been dealt. And the fact I’m still here is not due to anything I’ve done. It’s luck. My friends who have died were way stronger.
Marina MednikVaksman retweeted
'Pumping heart patch' ready for human use bbc.co.uk/news/health-484953…
Marina MednikVaksman retweeted
Advocates are powerful allies. They reveal our blind spots in clin care & rsrch via their lived experience w/ illness. They keep our compasses pointed north. Seek them out & respectfully listen. If you are an aspiring oncologist, I consider it mandatory. #MedEd #advocacy
