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    kdavis11259 posted an update

    I wanted to post an update of the results so far of my being on the new clinical trial drug ME-401 for the treatment of relapsed/refractory follicular lymphoma. It is also used for relapsed/refractory CLL/SLL. I got the results of my CT scan yesterday. The oncologist says that I am again in remission after only taking the drug every day for two 28-day cycles. I have had no side effects to this drug. This will hopefully be a game-changer for people who have relapsed/refractory follicular lymphoma and CLL/SLL.

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    kdavis11259 asked a questionNon-Hodgkin Lymphoma (NHL)

    Cancer Research Study-ME-401

    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.

      about 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/

      about 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.

      about 2 years ago
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    kdavis11259 asked a questionNon-Hodgkin Lymphoma (NHL)

    Acceptance

    4 answers
    • GregP_WN's Avatar
      GregP_WN

      I can easily see the connection. Thanks for posting that.

      almost 3 years ago
    • BoiseB's Avatar
      BoiseB

      Thank you for beautiful thoughts. The first I think I remember there was a prayer that expressed this I think it was called the "Serenity Prayer" I must look it up.

      almost 3 years ago
    • BoiseB's Avatar
      BoiseB

      I found it here it is:

      God grant me the serenity
      to accept the things I cannot change;
      courage to change the things I can;
      and wisdom to know the difference.

      Living one day at a time;
      enjoying one moment at a time;
      accepting hardships as the pathway to peace;
      taking, as He did, this sinful world
      as it is, not as I would have it;
      trusting that He will make all things right
      if I surrender to His Will;
      that I may be reasonably happy in this life
      and supremely happy with Him
      forever in the next.
      Amen.

      almost 3 years ago
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    Question: Acceptance

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