Primary central nervous system lymphoma

RetiredChief
RetiredChief Member Posts: 7 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Can anyone help direct me to a list of hospitals in Illinois that administer high dose methotrexate? My wife was diagnosed with PCNSL in October 2021. She did not do the HDMTX treatment at that time but her cancer has returned and we are considering that treatment option this time.

I had found a list somewhere that only had 4 hospitals on it but I cannot find that list now. Anyone have any suggestions?

Thank you!

Comments

  • ReginaMarie
    ReginaMarie Member Posts: 23 Member
    #2

    Hello! I'm sorry, I do not have an answer to your question, but I wanted to say, please be careful with methotrexate. My father used it to treat his rheumatoid arthritis and no one told him about the high risks of it causing liver cirrhosis when it is used over a long period of time. I just wanted to let you know, just in case. I wish your wife the best of luck.

  • PBL
    PBL Member Posts: 369 Member
    #3
    https://csn.cancer.org/discussion/326934/primary-central-nervous-system-lymphoma

    Hi RetiredChief,

    Sorry to read your news.

    Your best bet is to look up the closest/most accessible hospital among the NCI-Designated Cancer Centers here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

    In Illinois specifically, there are two: the Robert H. Lurie CC and the University of Chicago CC.

    I hope this helps. Do let us know how your wife fares.

    PBL

  • RetiredChief
    RetiredChief Member Posts: 7 Member
    #4

    Thank you both for your comments. I appreciate the help and information.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #5

    That is a listing of the National Cancer Institute designated comprehensive cancer centers by state. They are the best of the best. If it helps, had I not gone to such a facility, I would not have made it past 2009.

    https://www.cancer.gov/research/infrastructure/cancer-centers/find

  • Evarista
    Evarista Member Posts: 336 Member
    edited August 2023 #6

    Suggest reaching out to LLS.org for some assistance with this: https://www.lls.org/ The Patients & Resources tab has a link for Contact an Information Specialist. Best of luck with it.

  • RetiredChief
    RetiredChief Member Posts: 7 Member
    #7

    Update;


    It seems that the spot my wife was having in her right eye may not be lymphoma. We have seen 4 oncologists and the only one that says she has lymphoma in her eye is the ocular oncologist even though every test they ran was either inconclusive or negative. He says she has a DNA marker MYC88 that makes this lymphoma. Of course she has a history of lymphoma so for her to have this DNA marker is not out of the realm of possibilities.

    The other 3 oncologist do not believe that she has lymphoma in her eye. Her MRI's are stable versus previous ones. She has no symptoms other than this blind spot in her eye that she cannot see out of. And this has been going on since April 10, 2023. Two years ago when she was initially diagnosed with the brain lymphoma she went from fully functioning woman to an invalid in about 6 weeks!

    Her primary oncologist has suggested a wait and see approach and we agree with her. We are doing the methotrexate shots into her eye that the ocular oncologist suggested. The side effects are very minimal and the drug does seem to be shrinking the spot in her eye. Her eye site has not improved but the Ocular Oncologist says her pictures are better.

    So there is the latest, she is scheduled for another MRI later this month to see if the original tumor is still the same as before.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #8

    Chief I have no personal knowledge of this form of lymphoma. That said a neighbor had lymphoma in his right eye over 10 years ago and is fine today. There is much reason to be optimistic.

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