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Thread: 16 year old son with T cell ALL

  1. #1
    Newbie New User
    Join Date
    Apr 2017

    16 year old son with T cell ALL

    My 16 year old son was diagnosed with T cell ALL in early March. His leukemia is proving resistant to chemo. He has failed induction and now seems to have failed consolidation. His WBC has plateaued at 1 and the latest flow cytometry shows 90%+ blasts. We know he will need a bone marrow transplant, but now it seems that he may not be able to get to the 0.0 minimum residual disease (MRD) needed for a transplant. The next move is really intense chemo with horrid side effects that might not even work. Has anyone been in this situation before? I just want to make sure we know all our options. Thank you!

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear this. Where is your son being treated? If it is not at a [URL="https://www.cancer.gov/research/nci-role/cancer-centers/find"]National Cancer Institute designated cancer center[/URL], I would travel to the nearest one to obtain a second opinion on both diagnosis and treatment. At this point, it has at least the potential to be a misdiagnosis. The NCI centers employ the best and brightest, and, perhaps more importantly, conduct research via clinical trials so as to possess the latest in treatment paradigms. Any T-Cell malignancy is a challenge, so patients and loved ones need to be certain that both diagnosis and treatment are cutting edge.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 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. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

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

  3. #3
    Experienced User
    Join Date
    Sep 2012
    My son is 5 years since diagnosis...3 years of treatment...He never had to have a BMT, we were randomized on a clinic trial for Nelarabine Chemo... He came in at a very Hi - count like your son. Research Nelarbine, see if it may be an option for him..I know we react differently to meds... Hope you find some answers that help~ Tom
    Son Jacob - 20 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015


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