Waldenstrom Macroglobulinemia

My husband was diagnosed early in 2018. He also had rapid onset dementia…it was tough. We were dog mushers and spent weekends on the new river trail in Virginia. It was tough to give that up.

When he started on Imbruvica, his dementia started to go away within four days! Come to find out, it was Bing Neel syndrome, a rare side effect to Waldenstrom Macroglobulinemia. Our journey is not over but his quality of life is much improved.

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Comments

View Comments (3)
  • Ann Harper moderator
    2 months ago

    That is such good news. I hope all continues to go well.

  • CindyC moderator
    3 months ago

    I am so glad to read that when your husband started Imbruvica his dementia started to improve.Quality of Life is so important. I wish your husband continued progress. Celebrate all victories big and small and take things one day at a time.

  • bluchs
    3 months ago

    Jenny
    Good luck to you.
    I have been on Imbruvica for 17 months now
    It is keeping me alive.
    I was first diagnosed stage 4 lymphoma June 1st 2015.
    Then terminal May of 2017
    Your journey is not over, stay strong and keep faith
    Care givers suffer too! My son has suffered a lot being my care giver, I would be gone, if not for him.
    I am very lucky to have him.
    Your husband is a lucky man, to have you.
    God Bless You!

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