• What treatments are available for Mantel Non-Hodgkin Lymphoma/

    Asked by waltneely on Saturday, March 9, 2019

    What treatments are available for Mantel Non-Hodgkin Lymphoma/

    3 Answers from the Community

    • carm's Avatar
      carm

      @waltneely,
      Hello, I am an oncology nurse and if you are a stem cell transplant candidate, your first line therapy would be either the R-CHOP/R-DHAP or the Nordic regimen. If you are not a stem cell transplant candidate then first line is the BR regimen. I hope this helps.

      over 2 years ago
    • po18guy's Avatar
      po18guy

      An excellent resource is the Lymphoma Research Foundation. Here is a link to their home page on Mantle Cell.

      https://www.lymphoma.org/aboutlymphoma/nhl/mcl/

      The standard treatment options:

      https://www.lymphoma.org/aboutlymphoma/nhl/mcl/mcltreatment/

      Bear in mind that there are many drugs and combinations which are not labelled specifically for Mantle Cell, but which, when used "off-label" can have excellent results. The caveat here is that most general oncologists and many hematologists are clinicians and not researchers. Thus, they are hesitant to "go off the path." Such thinking and limitations nearly killed me. For all challenging cases, I very highly recommend that you receive either treatment, or at least a second opinion at a National Cancer Institute designated comprehensive cancer center. It is worth the trip. If you are in the states, find the nearest such facility here:

      https://www.cancer.gov/research/nci-role/cancer-centers/find

      over 2 years ago
    • Hilkei's Avatar
      Hilkei

      Here is my personal experience with Mantel Cell. I did R-CHOP through a port, my diabetes shot sky high, lost all my hair, huge side effects, still went to work daily, but was exhausted all the time. After 1 year remission my Mantel Cell Lymphoma returned.

      I am on a new drug specifically for this purpose called Calquence. I swear by it. 2 pills a day. Barely any side effects except energy loss. Still have hair, appetite is fine (too fine), I stay away from people with colds/flu. You may have to get help paying for it, it’s super expensive, but Astra Zeneca picks up what my insurance doesn’t. It may only be available as a second treatment.

      There is another similar I have heard of called (something like) Itumibab. It’s a pre-cursor to the Calquence by a different manufacturer, and may be available as a first line treatment, but when my Lymphoma came back Calquence was the best drug available for my purpose.

      I will be on it the rest of my life. It has an 80% remission rate so far and I am one of them. I know I sound like a commercial, and I apologize, but I thought I was done for when the Mantel Cell Lymphoma returned in Feb 2018. I had to go on disability. But here I am functioning, moving to a new house, doing things I couldn’t do before.

      Good luck, hope this is helpful. I will answer any questions and share my experiences anytime!

      over 2 years ago

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