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Thread: Where are we really?

  1. #1
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    Where are we really?

    My Mom just informed my sister and I 2 weeks ago that she had smoldering multiple myeloma and she was actually diagnosed over 5 years ago and never told us (sheís 82 and didnít want us to worry!) She has been experiencing problems with fatigue, constantly thirsty, no apetite, weight loss, back/neck pain, some forgetfulness, frequent infections (5 times with shingles in the past 2 years) and her oncologist has just told her the lesions in her skull have grown.

    I asked her for her blood work and did some research that was helpful, but as many of the posts here seem to indicate that this isnít necessarily a determining factor to prognosis some in normal range but from 6/17 thru present they have been dropping. She went in for blood work this past week and her oncologist called her on Friday to say she had progressed from smoldering to full blown.

    As she had been keeping this all from us until recently, I donít have a real sense where she honestly stands with any prognosis. As she has had a complex medical history with multiple allergies to numerous meds she has told us she does not want any treatment. What complicates things further, is the oncologist that she has a good relationship with and has been following her for the past 5 years is leaving his practice. I need some real help here and a realistic picture.

    My Mom worked in the medical field more over 30 years so she is well versed in many ways but she is a total trouper and seldom makes a big deal out of her health issues. Donít know what to do.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of your concerns. This will sound blunt, but you must allow mom to live her life out as she desires. She could be subjected to any number of damaging treatments that might actually shorten her life. Smouldering Myeloma is just that. It progresses slowly and is not an acute illness until at late stage. There may be a relatively benign treatment that can usefully extend her life - but that is strictly her decision to make. It should be an informed decision, and some education on recent advances against Myeloma might be appropriate. In the end, the best way to demonstrate your love for her is to respect her decisions and enjoy each and every moment spent with her.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) 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.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease. Active surveillance is the course of choice.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
    It sounds to me like your Mom has actually been out of the smoldering stage for some time, for as long as she has had active symptoms. Perhaps you could go with your Mom to an oncologist appointment. Ask lots of questions. Try to help her understand some of the symptoms of advanced myeloma like painful degeneration of the spine, broken bones, and kidney failure. If she still refuses treatment, then there is not much you can do. I believe there are some treatment options that would probably be less miserable that dealing with her advancing disease. I wish her and you the best.

 

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