• po18guy's Avatar

    po18guy posted an update

    Since entering a clinical trial of Istodax (Romidepsin) for Peripheral T-Cell Lymphoma three YEARS ago now, I have progressed from three treatments in a 28 day cycle, down to two, and now to a single monthly treatment. Being one of only a handful of long-term responders, doctor said at last treatment that he can foresee a maintenance treatment given every six months. Maintenance treatment for an aggressive T-Cell lymphoma? There is still no standard medical treatment for this aggressive NHL! Proof that great strides are being made in the fight. Reason for increasing hope.

    We are progressing through uncharted territory here, and while what is being learned has certainly helped me, it also holds a lot of hope for future patients.

    2 Comments
    • Blue's Avatar
      Blue

      It seems you're heading into promising territory if a Maintenance plan is in your near future. Yes. There is Hope in the strides being made.

      about 8 years ago
    • po18guy's Avatar
      po18guy

      Actually, I have been on maintenance for three years now. When the cancer (Peripheral T-Cell Lymphoma - Not Otherwise Specified) relapsed in February, 2009, it was in stage 1. The Istodax defeated it and there has been no evidence of the disease for just over three years. There is still no standard medical treatment for Peripheral T-Cell Lymphoma, and there may not be for the foreseeable future, since the category includes a rather wide variety of unclassified lymphomas, one of which I had. I remain in the long-term study of the drug and have been on it the second longest of all patients. It is being viewed as a suppressant of the disease, in the manner of allergy medication.

      about 8 years ago
  • po18guy's Avatar

    po18guy posted an update

    In case there is another patient here at WhatNext, I have been, and am being treated for Peripheral T-Cell Lymphoma - NOS (PTCL-NOS). The miracle is that I achieved complete response with a combo of CHOEP and GVD, then again after immediate relapse by receiving a novel HDAC inhibitor. I have NED after almost three years on Istodax (Romidepsin), and remain in the study of the drug, which is now approved for Cutaneous T-Cell Lymphoma as well as PTCL. Glad to share experiences.