• Double hit NHL

    Asked by MarciaLynn on Wednesday, August 15, 2018

    Double hit NHL

    Has anyone been diagnosed with Double Hit NHL?

    8 Answers from the Community

    8 answers
    • GregP_WN's Avatar
      GregP_WN

      It appears that nobody else has been diagnosed, or they don't know it by that name. What is the difference between this and normal NHL?

      3 months ago
    • MarciaLynn's Avatar
      MarciaLynn

      GregP_WN ~ This article explains it pretty well, much better than I could!

      https://cancer.dartmouth.edu/stories/article/42595

      3 months ago
    • judithj's Avatar
      judithj

      Yes, I'm diagnosed with double hit NHL. The first thing I did was get a second opinion for the treatment procedure.That allowed me to go with a more aggressive form of chemo - R-EPOCH.
      I'm still in treatment and hoping to be eligible for a CAR-T cell clinical trial. Get a second opinion if you can and then go straight ahead with determination, you can do this! And drink plenty of water during chemo!

      3 months ago
    • edieware's Avatar
      edieware

      Check out the fb support group for Car-t.

      3 months ago
    • judithj's Avatar
      judithj

      what does fb mean???

      3 months ago
    • Carool's Avatar
      Carool

      @judithj, Facebook.

      3 months ago
    • po18guy's Avatar
      po18guy

      If you are not being seen at one, please go to a National Cancer Institute designated comprehensive cancer center. They have the best and brightest on staff, perform research and have the best outcomes, particularly in cases of difficult malignancies. Find the closest such facility here: https://www.cancer.gov/research/nci-role/cancer-centers/find

      I did not have DLBCL, but did have two different rare and aggressive T-Cell Lymphomas (PTCL-NOS, AITL), plus Myelodysplastic Syndrome (MDS - a marrow cancer) simultaneously. After a stem cell transplant, there is no sign of any of the three at this point. I was and am treated at the Seattle Cancer Care Alliance (Fred Hutchinson).

      3 months ago
    • MarciaLynn's Avatar
      MarciaLynn

      MarciaLynn
      I just ran across a very informative article about Double Hit Lymphoma. It was only identified as a new classification of NHL in 2016 ~ one year before I was diagnosed with it. It is very aggressive and rapidly fatal if untreated, and is also more likely to invade the Central Nervous System than most NHLs. Therefore, in addition to each of the 6 rounds of 5 days of inpatient, IV chemo (DA-EPOCH-R) I had to have a chemo treatment injected directly into my spine.

      https://www.lymphoma.org/wp-content/uploads/2018/08/Double-Hit-Lymphoma_Fact-Sheet.pdf

      10/5/18

      about 1 month ago

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