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  1. #1
    Newbie New User
    Join Date
    Nov 2013


    my 60 years old mom has been diagnosed with :LIMPHO PLASMACYTIC LYMPHOMA WALDERSTROM MICROGLOBULINEOMIA and this was dine through bone marrow biopsy.She has been losing weight in the past 7 months around 8 kg and also had 3-4 times pneumonia so that was the reason she was sent to have the biopsy and was found.Also she was found anemic and in the blood tests the IGM was 10 times more than the normal.She had Ct's to the liver throat,stomac ,brests and all of the organs and nothing was seen there.Also was checked by an optometrist and nothing abnormal was found.Present time she has gained a little weight her anemy is gone so the doctors dont know what to do or how to treat her.I would like to know if there is some treatment for the diseas that can be given in this state so the cancer wont advance or even be stopped.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Pacific NW, USA
    Welcome! Fortunately, this is an indolent (slow growing) disease. There are several treatment options, but it is notable that maximum results may not be realized until after treatment stops. This is unusual, but cancer writes the rules. Here is a link to an information sheet about Waldenstrom's:
    07/08 DX Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 Relapse.
    03/09-06/13 Romidepsin. NED for 64 twenty-eight day cycles
    07/13 Relapse/Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. Watch & Wait.
    09/14 Relapse. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.)
    Intrathecal Methotrexate during spinal tap.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cytoxan (+ Mesna as damage control), followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives.
    09/26/15 Prednisone to control GvHD.
    To date: 16 chemotherapeutic drugs in 8 regimens. 4 of those drugs at least twice.
    Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1


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