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    stripe34 asked a questionNon-Hodgkin Lymphoma (NHL)

    2015 AITL - Angioimmunoblastic T-Cell Lymphoma Patients - Roll Call, Check In, How are you doing?

    4 answers
    • po18guy's Avatar
      po18guy

      As you know...

      07/08 DX PTCL - NOS, 4B. >50 tumors + BMI.
      08/08-12/08 4 cycles CHOEP + 4 cycles GND.
      02/09 Relapse.
      03/09-06/13 Clinical trial of Romidepsin. NED for 64 (28 day) cycles.
      07/13 Second relapse. Multi auto-immune symptoms.
      08/13 - 02/14 Romidepsin increased, but stopped - lack of response. Resolved spontaneously.
      09/14 Third relapse with visible nodes.
      10/06/14 One cycle Belinostat. Symptoms worsened. Stopped.
      10/13/14 Re-classed to AngioImmunoblastic T-Cell Lymphoma.
      10/25/14 Entered trial of Alisertib (MLN8237). Failed 01/05/14
      01/12/15 Belinostat resumed. Failed 02/23/15
      02/24/15 Pralatrexate started.
      03/12/15 Good abdominal scan, but Pralatrexate is now beating both of us up! Leucovorin rescue being employed 24 hours post-infusion.
      I am now in my sixth regimen and on my twelfth drug.

      almost 2 years ago
    • AIHR's Avatar
      AIHR

      AITL stage three diagnosed in October 2016 after excision of an inguinal lymph node. I had no symptoms other than the enlarged lymph nodes. I also got a second opinion and they recommended the same treatment plan of six treatments in three week intervals. Started CHOEP chemo in November and just completed round three of treatment. I lost my hair after the first round. Other than some nausea on day one of treatment I have been feeling well.

      2 months ago
    • enougha's Avatar
      enougha

      I was diagnosed with AITL in July 2016 based on one partially involved lymph node in my neck. No other symptoms then or since (although extremely minimal bone marrow involvement). So after three opinions I have decided to go with watch and wait. When (or I guess if) it becomes active and symptomatic, I will have to choose between a clinical trial of lenalidomide and romadepsin or CHOP-E followed by stem cell transplant. I hope it is not a mistake to wait, but I feel perfectly fine and hate the idea of going through all that chemo now.

      about 1 month ago
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    stripe34 shared an experience

    Other Care (Psychosocial): Psychologist and potential psychiatrist visits. Experiencing anxiety about cancer relapse, chronic GvHD symptoms/management/future, medical tests and procedures, and pain management

  • stripe34's Avatar

    stripe34 shared an experience

    Other Care (cGvHD - Chronic Graft Vs. Host Disease): Managed with prednisone, tacrolimus, and prophylactics (antibacterial, antiviral, antifungal), plus supportive (magnesium, Vit D, Calcium citrate) since GvHD diagnosed May 2013

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    stripe34 wrote on Charlie_pollet's wall

    Hi Charlie - - just found you on WhatNext as another AITL survivor - hope you are well! - Christy

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    stripe34 wrote on vou_ficar's wall

    Oops sorry I messed up your name - Vou?