Lymphomatoid Granulomatosis (LYG)

pniro
pniro Member Posts: 43
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Has anyone ever heard of this or know anyone who has had it? I know it is very rare but looking for anyone who has gone through it and tell us how they got through it.

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    The easiest way to locate other members with similar experiences is to type keywords (such as "lymphomatoid granulomatosis," etc.) on the search bar at the top of the home page. You can refine your search by clicking on the different categories of content listed below the list of keyword matches that you get from your search. The major categories of content on CSN are discussion boards, personal web pages, etc. For example, if you are looking for a personal web page, you can limit your search to personal web pages only by clicking on the "personal web pages" category. Remember that you must be logged in if you want to post anything on a discussion boards, view personal web pages, use the chat room, etc.

    You may also want to contact the American Cancer Society's National Cancer Information Center. Cacner Information Specialists are available 24 hours a day and can assist you with questions you may have. They can be reached at 1-800-227-2345.

    Take care and be well,

    Dana
    CSN Dana
  • Athan
    Athan Member Posts: 1
    #3
    I have recently been diagnosed with cerebral LYG. I am just starting to go through the process, so can only share my experience to date. I initially collapsed at home and was told I had a tumour in my brain. This was taken out and they advised me I had Meningoencephalitis. I was back at work and told should have no more problems. Approx 3 months later I had a seizure and a scan revealed 3 lesions in my brain. One was in the original site. I have been given a pulse of prednisone and one lesion in my brain cleared up and the other 2 halved. I have been slowly reducing my dose and last MRI revealed an increase in size. Current discussion is to try chemo radiation next depending on next MRI result. I am looking into radio wave therapy also. Hope we can both get through it let me know.
  • Allan Wells
    Allan Wells Member Posts: 1
    #4
    Lymphomatoid Granulomatosis
    My wife was diagnosed with this disease in late November(from memory)2006,after nine weeks spent in Royal Prince Alfred hospital at Camperdown, Sydney, Australia. It's a long and involved story but she nearly died in early January 2007 and I well remember having to fight to get the anaethetists to agree to putting her "under" for a lung biopsy as they felt her condition was too poor to survive the anaesthetic and she wouldn't "come off the table" alive. The Renal registrar (my wife is a kidney transplant patient)"went in to bat" for us, pointing out that without the biopsy she faced certain death.
    In Australia we have a saying; "Have a go ya mug!!!" which basically means to give something a try (attempt it) even if the odds are against you. Show some grit and don't be spineless. Anyway the anaethetists "had a go" and were successful, although my wife spent almost three days in the Intensive Care Unit.
    In late October (from memory)the hospital discovered the lesions deep inside her brain but couldn't work out what they were until an MRI scan (one of many and various types she underwent over the nine weeks)found similiar material starting to appear on her lungs.
    To cut a very long story short she survived after a long bout of chemotherapy, illness and very high doses of vitamin C. By God's grace and after much prayer the cancer disappeared over four years ago but has left it's affects both physically and mentally BUT she is a walking/talking miracle and a living testament to a loving God. Friends, family and people in the local community have often commented to me "Who would have thought five years ago she would still be with us?!!!". She goes for daily walks, cooks, is involved in a small singing group as well as a larger local choir, assists with reading at a local primary school on Thursdays, goes to a "Know Your Bible" group on Mondays and a Baptist Church home bible study group on Wednesdays, as well as church on Sundays etc. She has always had a positive outlook on life and, unlike 'yours truly', has never complained;not once!
    Make no mistake it has been a tough and at times frightening road but her hope is in Jesus Christ, both in this life and, more importantly, for eternity. Hang in there Sunshine!

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