• Cancer Research Study-ME-401

    Asked by kdavis11259 on Sunday, February 17, 2019

    Cancer Research Study-ME-401

    I have follicular lymphoma diagnosed in 2013. I have been treated for it twice, and was only in remission for about a year both times. Now I am considering, and am currently beginning the process of screening to participate in the cancer research study for the experimental drug ME-401 in the treatment of relapsed/refractory CLL/SLL and follicular lymphoma. ME-401 blocks a molecule called P13K delta which is present in normal lymphocytes and lymphoma cells. P13K's are a family of enzymes that are often over expressed and have been shown to play a critical role in the proliferation and survival of certain cancer cells. I was wondering if there are any other people who have taken this drug, or who have participated in this study, and if so, what has been your experience? Thank you.

    6 Answers from the Community

    6 answers
    • LiveWithCancer's Avatar
      LiveWithCancer

      I have not participated in it, but thank you for being willing to participate in a trial. I was in a clinical trial for 4 years for my lung cancer. If I ever have the opportunity again to participate in another trial, I will not hesitate to do so.

      over 2 years ago
    • icrazyhorse's Avatar
      icrazyhorse

      In November 2011, at the age of 64, my wife was diagnosed with follicular lymphoma Stage 4, Grade 3A. She had 50% bone marrow involvement. She is one of the 20% of follicular lymphoma patients who progress rapidly after treatments. In 3 years she progressed after R-CHOP (6 cycles), bendamustine/rituximab (6 cycles), and Ibrutinib (12 months). Then she took Idelalisib/rituximab as her fourth treatment. It worked great for 14 months then a PET scan showed she progressed again. She is now in an NIH CAR-T trial NCT02659943 was infused on March 2, 2016. As of February 18, 2019, she has been in complete remission for 35.5 months. Clinical trial studies show that CAR-T cells may result in long-lasting remissions for some people who have follicular lymphoma. There is more information on CAR-T for fNHL patients and people considering CAR-T at https://fnhlben.wordpress.com/

      Other non-Hodgkin lymphoma sites I visit often are:
      http://lymphobob.blogspot.com/
      http://www.lymphomation.org/#what-is-new
      http://www.lymphoma.org/ (look for free "Ask the Doctor" meetings near where you live)
      http://www.lls.org/

      over 2 years ago
    • SBK's Avatar
      SBK

      My doctor told me that I likely wouldn't qualify for any clinical trials in the future, so good for you that you can do it. My low grade marginal zone lymphoma transformed to high grade and I just finished Rchop so hoping I am in remission a bit longer than my first treatment which was single agent Gazyva only. Thanks for all the info everyone.

      over 2 years ago

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