Phyllis

DCIS 1995 ➡️ metastatic breast cancer 2008, 2 clinical trials LEE011,SRN,2 ports,2SIRT,Lymphedema,edema,paracentesis,0 tx &0 trials left (ineligible) #MBCKills

[Phyllis @Groz_P]

What's it like to have terminal cancer & need a clinical trial?
You might be surprised. Patients' Perspectives:
https://t.co/c69hRjrfu1

[Phyllis @Groz_P]

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!

[Phyllis @Groz_P]

@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 😔

[Amy Comander MD, FACLM, DipABLM @DrAmyComander]

Sharing my piece "Reflections on the Boston Marathon from a Breast Cancer Oncologist (or Why I Just Don't Quit)" https://t.co/Jsvgy42mdg … … … @newtonwellesley @mamadocsrunthis @HemOncWomenDocs #BostonMarathon2018 #Keepshowingup #CarpeDiem

[Phyllis @Groz_P]

@athleteonchemo @thejhcaldwell Gladdens my heart to see this! ❤️

[Suzanne @athleteonchemo]

I just published “MOTHER-DAUGHTER MORTALITIES” https://t.co/183hRQAjpe

[Phyllis @Groz_P]

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.

[Phyllis @Groz_P]

@athleteonchemo So sorry to hear this. Sending love to you and your family.

[Perk @sarahfperkins]

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 https://t.co/v8PlpSV9Sa

[Suzanne @athleteonchemo]

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?

[METUP @METUPorg]

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 https://t.co/k7UyAUt5aB

[Suzanne @athleteonchemo]

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.

[Phyllis @Groz_P]

@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.

[Esther Choo, MD MPH @choo_ek]

Check out #ShareAStoryInOneTweet

You’ll need this with you:

[Liz Highleyman @LizHighleyman]

In the spirit of @actupny -- die-in at Living Beyond Breast Cancer calling for action around metastatic breast cancer #LBBCmetsconf #bcsm https://t.co/DwrkGaregE

[Phyllis @Groz_P]

@Majormac1 Thanks Robin! Here’s a link to a video from last year’s DieIn in Philly. It’s sad but it’s reality: https://t.co/jaNMaWxsmq

[Phyllis @Groz_P]

@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 😱

[Phyllis @Groz_P]

@lgotl1230 I’m still here. You?

[Phyllis @Groz_P]

@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.”