leptomeningeal carcinomatosis

LoveFromPhilly Member Posts: 1,019


I found out last night at 10pm that I have leptomeningeal carcinomatosis. I have been in the hospital since Friday (it's Tuesday). I may go home today or tomorrow or who knows.

I have to start WBR today. And I will be switching chemos from Gemzar to Abraxane and Carboplatin.

My MO said that if the WBR doesn't work, we are out of options.

Anyone else going through this?


Philly aka Brenda aka Anxious in Philly Brenda



  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Moth posted thison the Breaking Nees thread last year:

    pembrolizumab (Keytruda) for leptomeningeal mets - not just in triple neg breast pt. Pts in this study weren't even all breast ca pts

    "Pembrolizumab (Keytruda) led to a 38% central nervous system (CNS) response rate and was well tolerated in patients with leptomeningeal metastasis (LMM) from solid tumors, according to phase 2 results" https://www.onclive.com/view/pembrolizumab-shows-i...

  • illimae
    illimae Member Posts: 5,351

    Not going through it exactly myself but I've had the lepto scare several times in the last few years. It hasn't been confirmed by spinal tap or spine MRI but I suspect it will be at some point. I did ask a lot of questions though and WBR is the standard first treatment and from what I understand the radiation weakens the BBB allowing the chemo drugs to get in and be more effective. I don't know about HER2- options but there must be something. I'd definitely check out what Shetland mentioned above. I wish you awesome luck and great response.

    Also, you may find more info on the Brain Mets Sisters thread.

  • kbl
    kbl Member Posts: 2,483

    I’m so sorry to hear this, Philly. I don’t have anything to contribute, but I am sending prayers and hugs.

  • candy-678
    candy-678 Member Posts: 4,018

    I cannot advise, but sending prayers.

  • 50sgirl
    50sgirl Member Posts: 2,071

    Philly, I hope that WBR yields good results for you and that you are able to recover quickly. You will be in my prayers. You have been a source of great support and strength for others here. Now it is your turn to receive strength and support from us.

    Hugs and prayers from, Lynne

  • moth
    moth Member Posts: 3,293

    Hi Philly, no advice beyond that pembro phase 2 trial that SP already posted. Sorry this is happening - I hope the WBR knocks it down and lets chemo do its thing. I'm thinking of you

  • sondraf
    sondraf Member Posts: 1,448

    Philly - 50s said it best. I know this is a big blow, especially as you were so upbeat on the other Gemzar thread. I hope you can find the support you need from us while you navigate this 'new world' and know that your spirit is much loved and appreciated here.

  • olma61
    olma61 Member Posts: 978

    Philly, just adding my voice and good vibes to the chorus. Hoping for the best possible results for you as you navigate treatment.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453


    No experience or advice but I am thinking of you.

  • sadiesservant
    sadiesservant Member Posts: 1,875

    Philly, also sending virtual hugs and prayers. I'm so sorry that you are facing this..

  • chicagoan
    chicagoan Member Posts: 826


    This just sucks! Praying for you as you navigate the WBR and new chemo. May you experience Shalom.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    Philly, thinking of you and sending love. Hoping everything goes smoothly and you get out of the hospital very soon.

  • jensgotthis
    jensgotthis Member Posts: 664

    I’m so sorry you’re dealing with this news and I’m the uncertain phase again. We are here for you sending all the love

  • nkb
    nkb Member Posts: 1,560

    Phiily- another Hug from here. Hope you are out of the hospital and in a cozy spot.

  • dutchiris
    dutchiris Member Posts: 783

    Sending hugs and hope to you.

  • mara51506
    mara51506 Member Posts: 5,796

    Philly, I am so sorry to hear this. We are here for you and I can answer any questions you may have about the WBR itself, hit us up on the Brain Mets Sisters as well for info.

  • figtree
    figtree Member Posts: 33

    Philly, once you get through WBR, would you please talk to your MO about adding an immunotherapy drug with your proposed chemo or other combination? If I remember correctly from your other posts, you have dMMR right? Mods just posted this new IO drug specifically approved for dMMR patients. https://community.breastcancer.org/forum/162/topics/880855?page=1#post_5695278

    As others also mentioned, Keytruda also has good track records in treating Lepto deseases. You’ll likely need to work with your MO to get access of keytruda through compassionate care directly from Merk. My MO has successfully treated two ER + patients with Lepto with abemaciclib + Keytruda just in this past year. It’s off label use and non-traditional, but it’s something to think about.

  • jobur
    jobur Member Posts: 493

    Dear Brenda, Your news came as a gut punch to me, I can't imagine how it must feel to you. I hope your WBR sessions are going well and the new chemo combo will get you back to your life again. So glad to see a couple ladies who have been through this post some helpful, hopeful ideas for you. (Thank you Mara and figtree!) I have no experience with this but want you to know you are loved and held close in thought. Jo

  • elderberry
    elderberry Member Posts: 1,029

    Philly: I haven't the words to convey my thoughts on how difficult this must be for you. I am with all the other ladies -- cyber hugs and in our thoughts.

  • chicagoan
    chicagoan Member Posts: 826

    Thinking of you tonight Philly. Hope you were able to leave the hospital. But wherever you are, I wish you L'Shana Tovah-a very happy New Year. You've been through a lot this past year and it's time for your luck to change.

  • jobur
    jobur Member Posts: 493

    Thinking of you Philly, hope you are out of the hospital and doing okay.

  • Iwrite
    Iwrite Member Posts: 745

    Hoping you are home and finding success (and no SEswith the new treatments! Also hoping you have some great friends and family supporting you. We are all pulling for you!

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019

    Hello everyone!

    Thank you so much for your love and support. I cannot tell you how heart warming it was to read all your messages.

    I finished the 10 rounds of WBC and all my hair has fallen out and my brain is acting "funny" like it is really hard to focus and to read or write anything. This email will put me into a nap!

    Today I start Abraxane and Carboplatin.

    I have not done the research and don't know what to expect. The Gemzar failed me and the cancer is still growing aggressively.

    I love each and every one of you. I i willl keep updated.

    One place you can find me reporting in is my Instagram which is "ShowerPortal" and I put all the good bad and ugly.



  • illimae
    illimae Member Posts: 5,351

    Thanks for the update Philly. I’m following you now, I’m ilonao. I hope you start feeling better soon.


  • moderators
    moderators Posts: 6,955

    We're all here for you LoveFromPhilly! Medicating

    We're sending you our love, optimism and support!
    Please keep us posted!

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019

    Thank you so much everyone!!!

    Illmae please feel free to say hello!

    Once some of my cognitive functions return a bit more I am hoping to be a bit more fun on IG.

  • Iwrite
    Iwrite Member Posts: 745

    Thinking of you Philly. Hoping for a steady recovery and better focus every day!

  • jobur
    jobur Member Posts: 493

    Hi Brenda! Thinking of you and hoping you are receiving excellent care and feeling a little better every day. With love from Wisco,


  • moderators
    moderators Posts: 6,955

    We are so saddened to post the news today that LoveFromPhilly (Brenda) has passed away. The news was posted on her gofundme page: GoFundMe.

    We know she had made so many friends here and was loved by so many. Her presence will be so greatly missed.

    Sending our condolences to all who knew and loved her

    May she rest in peace


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,453


    I have never read this thread before but for some reason I clicked on it and I am stunned and saddened. May her memory be a blessing to all who knew and loved her. I am going to start a new thread in the stage IV forum in case folks don’t read this thread. Man, this never gets any easier to hear 😞.