• 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
    • Homans' Avatar

      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.

      10 months ago
    • judithj's Avatar

      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.

      10 months ago
    • Homans' Avatar

      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.

      10 months ago

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