• Double hit NHL

    Asked by MarciaLynn on Wednesday, August 15, 2018

    Double hit NHL

    Has anyone been diagnosed with Double Hit NHL?

    11 Answers from the Community

    11 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?

      11 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

      11 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!

      11 months ago
    • edieware's Avatar
      edieware

      Check out the fb support group for Car-t.

      11 months ago
    • judithj's Avatar
      judithj

      what does fb mean???

      11 months ago
    • Carool's Avatar
      Carool

      @judithj, Facebook.

      11 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).

      11 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

      10 months ago
    • Homans' Avatar
      Homans

      I was just diagnosed with double hit lymphoma.
      From my reasearch, I have to fail two standard lines of treatment before they will consider doing CAR-T as a third line treatment, or if a clinical trial is available, that is the other way to get around failing two standard lines of treatment first.

      3 months ago
    • judithj's Avatar
      judithj

      I responded to this question 8 months ago. I have since had the CAR-T treatment at Stanford (having first failed 2 lines of chemo - R-CHOP and R-EPOCH) and cancer is now in remission. It's a long haul but NEVER give up. The treatment Stanford uses is Yescarta there is another one out there by Novartis called (I think) Kymrah. I'm 76 years old and am back to walking the dog and volunteering. And Marcia, I had those spinal infusions too - 4 of them while waiting for the immunotherapy at Stanford. It's to protect your brain from becoming affected by the cancer.
      Double hit lymphoma is no fun but - there are remedies out there - sending you all my best wishes and cheering you on.

      3 months ago
    • Homans' Avatar
      Homans

      Hi Judthj,
      Thanks for the encouragement. Your news is the most positive news I’ve received lately, and really gave me a boost. I’ve had two spinal fluid checks, and my spinal fluid has been clear so far. They did say they injected chemo as a preventative measure in case some lymphoma cells migrated into the spinal fluid.
      Since the chemo is not very effective in double hit, I hope we can move on to a second chemo after this last 20 day cycle if the cancer is just growing back, so we can eventually move on to CAR-T if the chemo is not working.
      Sounds like you are doing well after your CAR-T, and I wish you the very best in the future.

      3 months ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy


    Read and answer more diffuse large b-cell lymphoma questions.  Also, don't forget to check out our Diffuse Large B-Cell Lymphoma page.