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Thread: Sister in Law recently diagnosed MM

  1. #1
    Senior User
    Join Date
    Jan 2015

    Sister in Law recently diagnosed MM

    She is penciled in to spend a month in the hospital for stem cell transplant and extensive chemo this spring. Is this the standard protocol?

    Sounds pretty intense to be confined to a hospital bed for a month.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Pacific NW, USA
    Sorry to welcome you here under these circumstances. That treatment plan sounds pretty standard. Myeloma can be a challenge and so the intent is to put it into remission, or as close to it as possible, before moving on to transplant. At our current level of medical technology, a standard course of chemotherapy is the way to achieve that. The reasoning behind the transplant procedure is part protocol and part practical. There is little point in transplanting if the disease is not first controlled or eliminated. Once transplant takes place, her new immune system (which is what is being transplanted into her) will be a baby and needs time to grow.

    Transplant protocols vary, but generally it begins with conventional chemotherapy treatment to get the disease under control. If her own cells are being used for the transplant, then it is very desirable to have the disease in complete remission. This is true in any case, if possible. If a donor's cells will be transplanted, the process changes slightly, but not radically. Most transplants will involve high-dose chemo immediately before and after the transplant, along with drugs to protect her newly transplanted cells.

    It is shocking to hear that the chemo dosage may be as much as ten times the normal amount, but it is for perhaps 1-3 days, so there is little cumulative damage - as is seen with most standard chemotherapy regimens. The thinking is that no cancer cells could survive such a saturation with chemotherapy. Of course, she would not be able to withstand such levels of treatment for a long period of time, thus it is limted to a few days' worth. This often occurs once before and once after transplantation.

    As to time in the hospital, patients in times past would spend 100 days there. Some of the latest transplants are initially scheduled as outpatient procedures, which is something relatively new and cutting edge. Mine was this type, but I ended up spending two weeks hospitalized. Each case is different and if she does well, they can shorten the time, if they feel it is safe to do.

    I tried to explain a bit about transplants here: http://www.cancerforums.net/threads/...ll-transplants

    Please let us know how things go and feel free to as any and all questions. We are not doctors here, but rather, experienced laypersons.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 GvHD arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    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.
    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.

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


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