anyone progressed to leptomeningeal disease?

I have a young lady on the TNBC facebook page who has progressed to leptomeningeal disease I  wondered if anyone here has progressed to this or has any information I can support her with. 


  • iserbrown
    iserbrown Member Posts: 5,566
    I haven't heard of this but hopefully someone else may have

  • primek
    primek Member Posts: 5,392
    edited December 2018
    Possibly somebody from the metastatic group may be able to help. I am presuming they are looking at radiation for treatment. I can only imagine her distress. 
  • kmakm
    kmakm Member Posts: 7,974
    My sister's breast cancer crossed into her brain which she was told was very unusual. I don't know if it's the same thing but it sounds similar.
  • Annski
    Annski Member Posts: 112
    Leptomeningeal disease is quite rare (5% of stage 4s progress to it). Resistant cancer cells enter the cerbrospinal fluid and attach to the meningeal tissue. Sadly it is hard to treat, mainly radiation and chemo but some new approaches drill into the brain to deposit a chemo drug right in the meninges. Don't know if they are using this technique in Australia, I heard about it through a dear friend whose sister has been treated this way in the US. May give up to a year's extra survival. Otherwise prognosis is not good.Poor girl, it seems so cruel after all the treatment she will already have had. My heart goes out to her.
  • SoldierCrab
    SoldierCrab Member Posts: 3,446
    Thank you for the information. I had never heard of it. I know she is having rads at this stage.