AnneL

33 posts

AnneL

AnneL

@AnnePCDI

Joined Aralık 2021
26 Following54 Followers
AnneL
AnneL@AnnePCDI·
@jillfeldman4 Same thing with palliative care, which is supposed to be offered to Stage IV cancer patients but rarely is. Very frustrating.
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Jill Feldman
Jill Feldman@jillfeldman4·
We have to stop describing and start actionizing! But... how do we FIX it?!
Dr. Amy C. Moore@acmoorephd

Only 36% of patients with #NSCLC in the US get appropriate personalized care. I was on a call earlier this week where we acknowleged that this disgraceful statistic is even worse in other parts of the world. How do work to ensure equitable access to optimal care for all?

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AnneL
AnneL@AnnePCDI·
@CANsurvive So good that you are feeling more at peace and enjoying hat dances with your best guy!
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Flori
Flori@CANsurvive·
MAiD will be the ultimate comfort of no extended suffering for me. I can’t wait for my cancer cells to realize they will be dead, too. Hope they 😳panic. Weird I know. But still…#winning #mbc I’m in a good place, feel peace & enjoying my solitude🤍day at a time🤍
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AnneL
AnneL@AnnePCDI·
@CANsurvive This is beyond difficult in so many ways. Wishing you peace of mind and a soothed soul.
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Flori
Flori@CANsurvive·
Been up since 4 am - woke to my own sobs. No good choices and I’m so grateful for 26 yrs since diagnosis. Super grateful. But I’m suffering w this upcoming emotional departure. Working on death w dignity but don’t have it in place yet. Feeling very distressed.
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Flori
Flori@CANsurvive·
I sure know a lot about surviving cancer. But I know almost nothing about hospice. I did find out that hospice becomes my new drs. How awful at the most vulnerable time in my life the drs & nurses I’ve built yrs of trust w are out of the picture.
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AnneL
AnneL@AnnePCDI·
@LibbyMbc I had a Pleurx catheter which was eventually removed after endocrine therapy helped resolve the pleural effusion.
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LibbyMBC
LibbyMBC@LibbyMbc·
Has anyone got on a treatment that made pleural effusion go away? Send me stories of hope. I feel really fearful that this pleural effusion is forever
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AnneL
AnneL@AnnePCDI·
@CANsurvive Flori, of course you're upset and scared. Anyone would be. But they are able to perform endoscopic surgeries that would have been unheard of even a decade ago. Sending love.
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Flori
Flori@CANsurvive·
Onc & Gastro Dr friend called me. All to say why I need endoscopy #3 on Monday. There’s now an opening between trachea & esophagus. They want to try to fix. It seems like a long shot & I’m crying 24/7 Suddenly the end feels endy and I’m not ready😭😭😭 #15yrs #mbc
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AnneL
AnneL@AnnePCDI·
@CANsurvive This must be so frustrating and uncomfortable. A weird thought: might you ask your Dr. if you can dissolve the tablets in a little water and drink it?
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Flori
Flori@CANsurvive·
lungs hurt, innumerable ground glass etc. and nodes in throat no good. Must find a way to swallow baby size xeloda & see if it knocks back disease OR I have to go for an infusion. Prob trodelvy. That will be a different kind of suffering. I hate cancer.
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AnneL
AnneL@AnnePCDI·
@CANsurvive So sorry this happened and relieved it's behind you. Perhaps soft foods for a day or so just to recover. Sending hugs!
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Flori
Flori@CANsurvive·
Injection was ok. But while having won ton soup at home something got stuck for 2 hrs. Was 🤮up 2 hrs. Paged Dr & no beds in er & rsv/flu pts in hallways “Esophagus is weak.Try to get thru night” I broke down sobbing & it cleared! Drinking a smoothie going to bed.
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Alan Maloney
Alan Maloney@al_in_sweden·
@LGM_Biostats @davidcnorrismd @ErikaHamilton9 @drsarahsam @AnnePCDI Hi Liz…nice to make your acquaintance. I agree, as pharma/regulator, we should aim to determine the right starting dose, and then how/when to titrate up. Generally starting high just generates more severe toxicities that could have avoiding with a “smart” titration algorithm.
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Erika Hamilton, MD, FASCO
Erika Hamilton, MD, FASCO@ErikaHamilton9·
📣 dose reductions do not impact outcome with ribociclib in MONALEESA2 📣 📌2/3 patients on the study actually had dose reductions 🎯83% of pts feel better after reduction #ASCO22 #bcsm #ASCO22 @drsarahsam
Erika Hamilton, MD, FASCO tweet mediaErika Hamilton, MD, FASCO tweet media
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AnneL
AnneL@AnnePCDI·
@CANsurvive So happy to hear this wonderful news!
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Flori
Flori@CANsurvive·
🤗Brain stable/spots treated 11/21 improved and nothing new. 👏🏻👏🏻👏🏻 Waiting on CT report… #arx788
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AnneL
AnneL@AnnePCDI·
@itsnot_pink There's a subconscious tendency to perceive "newer is better." It ain't necessarily so.
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Julia Maués
Julia Maués@itsnot_pink·
Re: TROPICS-02 It would be very different is saci was much easier to tolerate than chemo. But that’s not the case. If ADCs are smart bombs, this one is “very bomb & little smart”. With that in mind, the difference of only 1.5 months in PFS is even less meaningful. #ASCO22
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Dr. Kelly Shanahan
Dr. Kelly Shanahan@stage4kelly·
So bummed I’m missing #ASCO22 but incredibly grateful to Dr @hoperugo for facilitating getting my husband to @UCSFOrthosurg - he was admitted straight from clinic today and will be having the 1st of a series of surgeries tomorrow. Good juju welcome!
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AnneL
AnneL@AnnePCDI·
@NRA NRA, your guns are aborting our children.
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AnneL
AnneL@AnnePCDI·
#NRA NRA, Your guns are aborting our children.
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Stacey Tinianov (she/her) MPH, BCPA
@jillfeldman4 @maryam_lustberg ❤️ This team was amazing. As you know "validation of feelings" is my heartsong w/ regard to 1st step in psychosocial support. I didn't attempt to petition for "being seen, heard & held" but they likely would have allowed it (& I feel like it comes across just fine) @crisbergerot
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AnneL
AnneL@AnnePCDI·
@al_in_sweden Interesting concept indeed. Wondering what criteria you would envision being used by the titration algorithm?
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Alan Maloney
Alan Maloney@al_in_sweden·
@AnnePCDI I would go even further. Imagine in the FDA had a webpage with a recommended dose titration algorithm (starting dose, and when to titrate up/down). Better still where patients, with their consent, could even upload their dose ‘trajectory’ and outcomes, to share/learn with others.
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Alan Maloney
Alan Maloney@al_in_sweden·
Watching #ProjectOptimus online. Will we hear anyone say that we need different dose regimens for different patients? Everyone says "we have heterogeneous patients & heterogeneous outcomes", but no one seems to want to explain the consequence of that...we need to dose titrate!!
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AnneL
AnneL@AnnePCDI·
@al_in_sweden A range of doses is something I've always hoped for! Just Imagine if the package insert depicted a range of doses from which the best dose for a particular pt could be selected...
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Alan Maloney
Alan Maloney@al_in_sweden·
@AnnePCDI Hi Anne…great to know someone read my comments at the meeting! Yes, no need to titrate up if drug working well. However having a very wide range to titrate over will allow each patient to find their dose. E.g. currently low/high might be 10/20mg. I am talking about,say, 1-50mg..
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