Leptomeningeal Metastases or Carcinomatous meningitis in Brain

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited October 2018
    Hi
    After hearing the worst news possible, about LM just like that I am recovering from the shock and fighting. Had spinal tap and ommaya reservoir put in. Had 3 injections of methatrexate. Go again Friday. I have bone biopsy to confirm what kind of breast cancer this is so I can get 2 opinion about extensive bone mets. I cannot beleive I went from working full time on October 5th til now! My question is : How long are people living on here with Leptomeningeal disease? Haven’t heard any news about Valerie Harper lately. Any input, prayers or experience will be greatly appreciated. Thank you so much! ilene
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  • illimae
    illimae Member Posts: 5,710
    edited October 2018

    ihopeg, I don’t think this thread is very active but there are a couple ladies with lepto mets on the brain mets sisters thread. I had a possible lepto met on an MRI a few months ago, fortunately the spinal tap was negative and it was just a regular met close to but not actually in the fluid. Anyway, I did ask my neuro onc at MD Anderson about the Ommaya port and lepto treatment. She said that they have a couple of patients who’ve been using their ports for lepto mets for over 7 years. This is not the norm of course but it is possible 🙂

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  • Ihopeg
    Ihopeg Member Posts: 399
    edited October 2018
    Thank you so much! I’ll try there too
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  • mike3121
    mike3121 Member Posts: 410
    edited June 2019

    Ihopeg, you have almost the same DX as my wife. Recently, May 25th she had a seizure and from there they discovered her Dura was cancerous. My wife is TNBC and was on eribulin for mets to her bones. The Eribulin had been working and had 2 NED PET scans recently.

    She's undergoing 10 days of WBR. Radiologist says it won't save her and she's only got a few months to live - that is with radiation only. The radiologist is concerned with the radiation part of her treatment. I have no idea what they might prescribe; perhaps carboplaten as it goes through the BBB. Her oncologist didn't want to give her an Ommaya and felt methatrexate doesn't work well. Why???


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