t cell lymphoma nos - ptcl

Hi have recently been diagnosed with PTCL nos,   keen to hear from any other survivors with this rare diagnosis.  


many thanks




  • po18guy
    po18guy Member Posts: 1,261 Member
    5 years now

    After experiencing symptoms in May, 2008, I embarked on a journey which ultimately saw me diagnosed with PTCL-NOS (Peripheral T-Cell Lymphoma - Not Otherwise Specified). I was at stage 4, with "innumerable" nodes involved above and below the diapragm as well as bone marrow involvement. Through the efforts of my wife, who has been my angel through all of this, I was treated at Fred Hutchinson in Seattle, given a stout double regimen of CHOEP-14 followed immediately by GND. I was in remission halfway through, but relapsed immediately. My prognosis went from poor to very poor. But, that was when a clinical trial of a then-experimental drug (Istodax/Romidepsin) opened up. I started in the trial and the cancer went away. There has been no sign of it for four years now, and I remain in the long=term study of the drug.

    This is important, and potentially life saving: I would seek out a world-class cancer research facility that has extensive experience in succeeding against T-Cell Lymphomas. They require specific knowledge and treatments, and time is of the essence. 


    Here is a link to a presentation on T-Cell Lymphomas. The presenter, Dr. Andrei Shustov, is the doctor that has saved my life twice now.