Stage 4 NonHodgkin T Cell Lymphoma

My fiance has stage 4 nonhodgkin t cell lymphoma I'm looking for success stories. We don't know what to expect.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 Member
    Rare

    Tee,

    T-Cell lymphoma is extremely rare.  It nearly always requires a T-cell specialist to treat correctly.  Often (usually) it is also aggressive in nature.  A local doctor in a community hospital is in many cases not appropriate for successful outcomes.  The main issues are that the cell types are commonly misidentified (a problem with pathology), and then after identification, are not treated properly, since becasue the disease is so rare, correct treatments are not well established.  Most NHL and HL lymphomas are derived from corrupted B-cell stems, and doctors not proficient with T-cell often just use B-cell approaches, which often are inappropriate.

    Where is your fiance' being treated ?  It needs to be a premier institution.   Something of the order of Fred Hutchinson (Seattle), the Cleveland Clinic, the Mayo Clinic (Minnesota), MD Anderson (Houston), Sloan Kettering (NYC), Stanford, Duke, Emory (Atlanta), City of Hope (L.A.), Moffitt (Tampa), Johns Hopkins (Baltimore) -- something of that order.  Some of these cancer centers have "satellite," affiliated centers recognized in larger hospitals around the nation, where the doctors can draw upon the expertise of the other location.

    I highly recommend that you CNS email our go-to guy for all things T-cell, Po.  His screen name is Po18Guy.

    max

  • po18guy
    po18guy Member Posts: 1,459 Member
    Private messaging

    If you can unblock your messaging, I can forward you lots of information.