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  • moth
    moth Member Posts: 4,800
    edited July 2021

    faroutstar, it is difficult to assess prognosis without knowing how she responds to treatment. What are the hormone markers? That matters. But no matter the markers some treatments work very fast on some people to clean up even extensive mets, or at least stop them spreading. Until you try it's hard to know who will respond well & who won't.

    A lot depends on whether she is in visceral crisis (where one or more organs is failing) and whether she can withstand aggressive treatment.

    Weeks/months is *untreated*. Treated like I said above really varies on response. Also, agencies have not really been good at tracking this data so we have to extrapolate from studies done on de novo patients, who do tend to have better OS than patients who develop mets after an early stage diagnosis. Nevertheless, it's a starting point. If you look at this study, https://bmccancer.biomedcentral.com/articles/10.11... & see Figure 3 you will see that OS varies by hormone marker status and location of mets.

    I hope that gives you a bit more info to go on.

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  • runor
    runor Member Posts: 1,798
    edited August 2021

    I have heard from Jaycee49 husband.    She left us on Friday, July 30. 

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2021

    She is finally at peace.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    Oh man, I am so sorry to hear that but I know she is at peace. May her memory be a comfort to all who knew and loved her.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2021

    Its always tough to read one of these posts, but she put her all into her advocacy work in the last 9 months or so and I am so happy she was able to see the fruition (and possibly avail of it?) of her efforts. I'll miss her no-nonsense attitude and insistence on doing cancer her way, and not the other way round.

    Runor - your post read (to me at least) like she decided she had dealt with mBC enough and her energy and focus is now needed elsewhere. I like to think that is true.

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  • moth
    moth Member Posts: 4,800
    edited August 2021

    Thank you runor :'(

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  • SF-Cakes
    SF-Cakes Member Posts: 316
    edited August 2021

    Thank you for letting us know, runor. Lighting a candle for the wonderful Jaycee. ❤

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2021

    There have been periods of time over the last 10 years when months seem to go by without any of us passing away. I am not given to wishful thinking when it comes to bc but during those periods a small corner of my brain thinks, maybe it’s getting better, maybe the treatments are working, maybe there’s progress when treating mbc…then reality hits. It isn’t getting much better for most mbc patients. Jaycee was such an advocate for all of us who will have to face end of life decisions. May she rest in power

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  • Snow-drop
    Snow-drop Member Posts: 514
    edited August 2021

    our wonderful Jaycee (Janet) Rest In Peace 🕯

    She made huge impact in MBC community. She was in my thoughts but I didn’t have heart to check this thread, I didn’t want to read this sad news about her...

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  • Maire67
    Maire67 Member Posts: 768
    edited August 2021
    An amazing woman who advocated so bravely for all of us. I will never forget the honor it was to know her through these boards. Wishing her every lasting peace. Maire
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  • candy-678
    candy-678 Member Posts: 3,950
    edited August 2021

    Rest in Peace Jaycee

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2021

    Jaycee was a strong, thoughtful woman who contributed so much to these boards and to her community. She will be missed. May she Rest In Peace

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited August 2021

    exbrnxgrl, I know what you mean. I sometimes think that great strides are being made when periods of time pass without losses. I notice that some people have been on a treatment for years, and I assume we have turned a corner. Then, bam, sad news is posted about yet another loss or people report progression or their decision to stop treatment because it just isn’t working. We still have a long way to go

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  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited August 2021

    Rest in peace, Jaycee. Your presence will be missed here on BCO.


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  • Micmel
    Micmel Member Posts: 9,450
    edited August 2021

    Jaycee ~ you will be missed. A force , a friend, a sister. Fly free cancer free. Rest In Peace.

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  • Sadiesservant
    Sadiesservant Member Posts: 1,995
    edited August 2021

    Rest in peace Janet. You had a profound impact on this world and will be dearly missed by all those you have touched.

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  • DorothyFromKansas
    DorothyFromKansas Member Posts: 34
    edited August 2021

    You did it your way, dear Janet. Now you can soar free. We will miss you.

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  • Snow-drop
    Snow-drop Member Posts: 514
    edited August 2021

    Runor, would you please add Janet to memoriam list. It would be great to add a brief on how she bravely worked hard to get the DWD bill passed in her state, NM. She will be m

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  • mara51506
    mara51506 Member Posts: 5,088
    edited August 2021

    Rest in peace Jaycee. I let the brain mets thread know as well.

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  • SeeQ
    SeeQ Member Posts: 884
    edited August 2021

    RIP Jaycee, and thank you for your advocacy.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited August 2021

    I just recently have been popping back on here and I am so sad to see that Jaycee has passed. She made me laugh and wanna throw my laptop at the wall at times. What an incredible, strong, amazing human. I am so sorry to know she is no longer incarnate with us here on Earth but her strong and incredible and self-advocating spirit will always be part of what has helped me be this person for myself with my care. Rest in Strength Jaycee <3


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  • Nkb
    Nkb Member Posts: 1,436
    edited August 2021

    thank you runor. I will miss her- hope her last days were what she wanted

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  • KBL
    KBL Member Posts: 2,521
    edited August 2021

    Philly, it’s so good to “see” you. We miss when members aren’t as active and worry as well. I hope you’re doing well.

    I commented on another thread about Jaycee. She will be missed so much by so many.

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited August 2021

    Jaycee’s passing makes me so sad! I knew she’d reached a turning point, but I did not think it would happen quite so fast. So it’s a bit of a shock. I will miss her! I got to know her on the Ibrance thread where she was immensely helpful to all the newbies, especially when it came to sharing tips on getting financial help to pay for the drug. She had a strong presence on the forum. It really breaks my heart to know she is gone.

    RIP, Janet.


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  • helenlouise
    helenlouise Member Posts: 420
    edited August 2021

    RIP Jaycee.

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  • IntoLight
    IntoLight Member Posts: 1,701
    edited August 2021

    Rest in Peace Jaycee. You were an amazing support to us all.


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  • jensgotthis
    jensgotthis Member Posts: 937
    edited August 2021

    Divine, I echo your post about Jaycee. She was such a proponent of empowerment. And she was kind, snarky, funny, smart. I will really miss her

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2021

    I will miss you Jaycee. No more pain. No more Cancer. I don't ever think she will stop being an advocate for someone or something. Rest in Peace.

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited August 2021

    my condolences to all who knew and loved Jaycee. What amazing work she did ❤️

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  • faroutstar
    faroutstar Member Posts: 12
    edited August 2021

    Moth,


    Thanks for that reply. I am just seeing it oddly enough pop up. I have been on here reading and such on and off since then.

    I am very sorry for the loss of Jaycee which many expressed condolences for after my post.

    With that said, in regards to my mom's markers. I am just seeing this reply! First of all thank you for replying. I will check this link out as I have read so much since all this began and learned way more than I could ever imagine.

    For her markers - is this what you mean? What other markers would be used if not just this one? Her CA 27.29 was 4283.2 on June 14th. July 6th it had went up to 8988.0!! After her first "round" of Ibrance/Faslodex it dropped down to just 8498.0. Her labs were basically the same from baseline actually except her WBC went down quite a bit. He is very concerned with the CTC count of 39 at baseline and we will get another CTC count after her second round. Her doctor said he would rather use the CTC as his guideline over more imaging. So I have tried to read alll I can on CTC levels at baseline and just what CTC levels mean. I wish I could understand the marker stuff more. But from what I researched off each detail of her labs both baseline and after round 1 - the studies and such based on certain counts and what hers are - the prognosis would be poor.. But I know that she is hopeful and a fighter. :)

    All I am aware of organ wise is her liver having "innumerable" lesions. Her lung and abdominal lymph nodes are also involved per her doctor.

    After our visit this last week - my mom feels her doctor is not giving her all the info she needs to know. She thinks that he is not being upfront about a prognosis and such to worry her less. But the PA was very upfront about a prognosis before treatment even began - I mean my mom asked right away how long she had. But her doctor will not say anything of the sort. So she is frustrated. She realizes she is 75 and has other issues she has dealt with along with cancer again - but she also wants to know the facts from her doctor - not my new role as the family doctor! lol I am not sure what to think to be honest and I try to just be here for each feeling she has on it all and we try to be optimistic and realistic at the same time.

    Thanks for the link - I will check this out. I have done a ton of research and have read some very informative articles like this one.

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