Phyllis @Groz_P
DCIS 1995 ➡️ metastatic breast cancer 2008, 2 clinical trials LEE011,SRN,2 ports,2SIRT,Lymphedema,edema,paracentesis,0 tx &0 trials left (ineligible) #MBCKills METUP.ORG boston area Joined July 2012-
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Followers1K
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Likes4K
RIP Phyllis Groskin. A powerful advocate for herself and her sisters and brothers in the MBC community. @METUPorg @METUPUKorg. Beloved wife of @sperki. Thanks for supporting her. Carry the flame Metsters!
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@athleteonchemo So sorry to read this. I also was privileged to be with my parents when they died. Years later, that still gives me comfort 😔
Phyllis retweeted
Sharing my piece "Reflections on the Boston Marathon from a Breast Cancer Oncologist (or Why I Just Don't Quit)" nwh.org/media/file/The… … … … @newtonwellesley @mamadocsrunthis @HemOncWomenDocs #BostonMarathon2018 #Keepshowingup #CarpeDiem
@athleteonchemo @thejhcaldwell Gladdens my heart to see this! ❤️
Phyllis retweeted
I just published “MOTHER-DAUGHTER MORTALITIES” medium.com/@neworleansins…
A #BitofBeauty from our garden. Peonies came from my grandparents in PA to my parents in NY and now me in MA, making the original plants around 80 years old.
@athleteonchemo So sorry to hear this. Sending love to you and your family.
Phyllis retweeted
To have this much influence and this many resources at your disposal, yet still ineffectively utilizing it and benefiting only part of the affected population...its just plain sad @SusanGKomen #pinkisnotacure #fundresearch
We are holding @SusanGKomen accountable on how they use donations. #Stage4needsMore
Phyllis retweeted
Hey @BCBSLA you decided not to cover the TACE liver treatment my radiation oncologist is recommending because he has seen it work for other patients in a position similar to mine. You won’t cover it because it’s ‘investigational’ but isn’t that how science advances?
Phyllis retweeted
You just have to wonder why one of the largest breast cancer non-profits does not understand the sexualization of #breastcancer is not cool with anyone. What about the 30% who detected BC early & it came back to kill them? You should be ashamed @SusanGKomen & @AdCouncil #bcsm
We are proud to announce Komen and @AdCouncil’s new campaign, Know Your Girls! Follow along at @_KnowYourGirls & head to KnowYourGirls.org to learn more about breast health & #breastcancer risk. #KnowYourGirls
Phyllis retweeted
Hey @BCBSLA why are you denying me the TACE liver treatment I need to stay alive? You say it’s investigational and won’t cover it. To me it is life extending. Obviously your profits are more important than my life.
@lgotl1230 @athleteonchemo You both are awesome! I’m working on regaining muscle/cardio lost during the winter (oof). Having a 2nd SIRT on Monday (1st was 👍🏼). I’m on a slow downward roll 😕 but not dead yet.
Phyllis retweeted
Check out #ShareAStoryInOneTweet You’ll need this with you:
Phyllis retweeted
In the spirit of @actupny -- die-in at Living Beyond Breast Cancer calling for action around metastatic breast cancer #LBBCmetsconf #bcsm
@Majormac1 Thanks Robin! Here’s a link to a video from last year’s DieIn in Philly. It’s sad but it’s reality: youtube.com/playlist?list=…
@lgotl1230 SIRT: so far no probs. Scans in a few weeks. I now have trunk/lower body Lymphedema which is a massive drag (23 yrs post dx). May be a growing cohort of mbc metsters developing Lymphedema 😱
@athleteonchemo Not sure there’s a good way/time/setting for this convo. I run on dual tracks: “Yep, I hear you, got my affairs in order” and in my head “You might be wrong, it’s not quite time,yet.”
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