• historicglass' Avatar

    historicglass posted an update

    DX 5/13/11 friday the 13th Waldenstroms, (WM) slow growing indolent nhl, showing
    significant symptoms, hyperviscosity, bad blood counts. Went thru R-CVP, 6 rounds

    Many of us WM folks react badly to Rituxan, sadly I am one of those. I had to do 8 hour
    infusions, finished chemo 8/29/11, R made me very sick

    Starting feeling weak a few weeks ago, got a blood test, very low hemoglobin 7.1
    got a blood transfusion, put me on the dreaded prednisone and have recovered my
    levels of hgb

    I am making enough hgb, but my immune system (WBC) is destroying it. PET, Ct shows
    no reduction in large nodes in abdomen. Got a BMB this week, if that doesn't tell much,
    next is a needle biopsy to look at the nodes

    My local Onc is baffled, consulting at one of the local teaching hospitals (Northwester Univ)
    The Onc there wants to stick me on Rituxan and Bendamustine (R&B). If is effective
    for WM, but I am deathly allergic R

    The experts on WM are Mayo and Dana Farber. They are recommending a Velcade
    treatment, partly because of my familial connection. Mom has WM

    I am going to hold off on treatment till Jan, when I can go to Mayo and Dana Farber

    Wish I had gone to the experts at the beginning

    Mark 54, Chicago

    1 Comment
    • Elizabeth's Avatar
      Elizabeth

      I go to Mayo in Florida the doctors there are very nice. Im sorry that you are having issues with Rituxan. The doctors at Mayo have me on Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone (CHOP). Best of Luck I hope they find a treatment for you that not only works but has minimal side effects.

      about 5 years ago
  • historicglass' Avatar

    historicglass shared an experience

    Decision Point: the local onc (Northwestern Univ) wants to do R&B, I am terrible allergic
    to R. I need to find a different Onc. Going to Mayo and Dana Farber in Jan

  • historicglass' Avatar

    historicglass shared an experience

    Side Effects: R-CVP: R made me very sick, bad, long infusions and two weeks of flu like
    symptoms

    Vincristine gave me serious neuropathy,

  • historicglass' Avatar

    historicglass shared an experience

    Clinical Trial: The one trial the might help CAL-101, I am not elligable beause I have
    not failed at least two treatment regimens

  • historicglass' Avatar

    historicglass shared an experience

    Drug or Chemo Therapy: Very very allergic to Rituxan, plus it didn't work, back to square one

  • historicglass' Avatar

    historicglass shared an experience

    Oh No