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    Homans wrote on Mk4life2's wall

    Hello, just a heads up, I had a sub type of NHL called Double Hit (DHL), and I just had clear 30, 60 and 90 day scans after CAR-T treatment at Kansas University in Kansas City.
    KU or Washington Univ. were my nearest treatment providers as not all providers offer the newer CAR-T, or trials using the latest immunotherapy treatments yet. CAR-T is currently FDA approved for a 3ed line treatment, but they are trying to move that up to a 1st or 2nd line. If you are relapsed, you might be able to do it now.
    I also understand Barnes Hospital at St Louis, who I’m told is affiliated with Washington Univ. Is doing BITE treatment trials. We have a friend who we met at KU during my treatment who also has DHL, and they are enrolled in that BITE trial right now. For whatever reason, the CAR-T didn’t work for her, but she still has a shot with the BITE trial, so not sure how it is going to work out, but could keep you updated if you like. Both of us were stage IV when we started our CAR-T treatment. The DHL sub type was only identified in the last 7-8 years, and it is very aggressive and rarely responds to any standard chemo treatment as mine grew back before the end of my 21 day cycle to about where it was when I started the chemo. Best wishes to you and just know there have been a lot of advances in the last 5 years, and I would highly recommend the research facilities for treatment.

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    Homans wrote on judithj's wall

    Hello Judithj,
    Update from Homans:
    After failing two standard chemo treatments R-EPOCH and R-ICE, I finally got to try the CAR-T, and had the infusion back on June 5th.
    My 30, 60 & 90 day scans now show no sign of Lymphoma cancer.
    My ANC count was the last blood count to recover, and took about 90 days, but I’m now off all my medications, and feeling good enough that I decided to go back to work on 9/6/19, which was perfect as my short term (6 month) disability was about to run out.
    I read about a new drug treatment called BITE. I was told they are doing a trial at Barnes Hospital at St Louis, A friend of ours that also had Double Hit Lymphoma went to Barnes to get in a BITE trial after failing the CAR-T treatment.
    BITE works similar to CAR-T, but uses a drug bridge to bind the T-Cell to the cancerous B-Cell, instead of reprogramming the T-Cells to bind directly to the cancerous B-cells to destroy them.
    Thank-you for your encouragement, it gave me the hope I needed when I was really down, and it helped me get through my journey. Since CAR-T is so new, only time will tell how well it will last on keeping the cancer in remission, but I’m very impressed so far. Very Best wishes to you, and hope all is going well with you.

    1 Comment
    • judithj's Avatar
      judithj

      Thank you for your update! I really appreciate your taking the time to let us all know how you are getting on. Congratulations.
      Also, thank you for letting me know about the new treatment BITE.
      I'm finding that one of the unforeseen 'bumps' in recovery is suddenly being let loose from that never-ending round of treatment/tests/shots/appointments. It's a little like being on a benevolent treadmill and suddenly....stepping off.
      You're happy but - where are all those people that were taking your -it seemed- hourly pulse?
      Time to get on with the new life and fill it with joy and happiness at just being here.
      Cheers to all of us!!

      5 months ago
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    Question: Double hit NHL

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