Lymphomatoid Granulomatosis

Fionna2108 Member Posts: 4
Hi, I am asking for anyone who has a loved one with Lymphomatoid Granulomatosis of the Central Nervous System (my sister has it from the brain and the spinal cord.)

My sister is British living in Australia with her young family and is 39 years old. She has in the last 12 weeks been diagnosed with the condition and is currently has Stage III of the disease (which has been recently changed from Stage II) She is receiving treatment in Sydney where she lives and is having Chemo/Chop with Rituximab.

I would be grateful to know of any long term survivors of Stage III of the Central Nervous System and how long they have had Stage III with what treatments and any information/links that they have found helpful.

Many thanks



  • Daniel530
    Daniel530 Member Posts: 2
    Hello Fionna,
    I am hoping you

    Hello Fionna,

    I am hoping you still check this website. Or if anyone has any information on this disease.

    My mom was diagnosed with Central Nervous  System LYG Grade 1.  She has a  tumor on the outside of her right front temple growing outside her skull.

    Within a few months, the disease has progressed to Grade 3. How long did it take for your sisters grade to progress to Grade 3?  Was she being treated during the progression?


    I hope your sister is doing better. Thank you for any information you can provide to me.