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Thread: My ten year old cousin is in remission

  1. #1
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    My ten year old cousin is in remission

    My ten year old cousin is in remission, she had aml leukemia and has recently got her central line removed. Though she is in remission, her numbers aren't doing too well. Her mother smokes, and her dad does too. I'm so afraid that her cancer is going to come back because her parents seem to not be worried that it could come back. Now that her numbers are low and she hasn't been doing too well, everyone in my family has been wondering if she could get it again. She has just started being in remission about three or four months ago, and she hasn't even surpassed that five year safety mark. Does anyone have a percentage of how likely she could be at getting it again. I want to protect her as much as possible and her parents keep saying that they will quit. Leukemia is too scary to go through again.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of your worries about this. As to remission, her doctors have tailored her treatment so as to bring her to remission. Since leukemia begins in the bone marrow, the drugs used against it have side effects there. One of those side effects is that her blood numbers will take time to recover, as the marrow is damaged during chemotherapy. Remember also that children may receive a heavier dose of chemotherapy than adults because it is more likely to place them and keep them in remission. Children are more resilient than adults and can tolerate and recover from heavier treatment than adults. I have no doubt that she is being closely monitored by her medical team and any issues that arise will be dealt with. As to the five year mark, that is a number that reflects averages, but is no guarantee of remission either before or after. Cancer is far more complicated than that.

    As to her living environment, that is under the care and control of her parents. There is research to suggest (but not prove) that exposure to tobacco smoke increases a person's risk of cancer, but the research not conclusive or final. If her parents smoke out of doors, then any risk would be so tiny as to be insignificant. I would imagine that they have been advised of the risks of smoking, both to themselves as well as to others. I would hope that they have taken the advice they received. Yet, her living conditions are under the control of her parents. Have your parents spoken to hers about their smoking?

    While concern for others is always a good thing, something to avoid is our human tendency to be more upset about what others are going through than they are themselves. That does not help either us or them. Positive support for her parents to stop smoking is appropriate, remembering that her parents are at much greater risk for cancer than she is. This is something to discuss with your own parents.
    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.
    08/17 Bone marrow aspiration/biopsy reveals 2% cells with 20q Deletion, a form of Myelodysplastic Syndrome, yet a different form than in 2015. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and two of myeloid malignancy lend a certain symmetry to the journey.

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

  3. #3
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    Yes my mom has brought it up several times but my cousin's mother's answer is always "I'll quit later" or "It's really hard." The scariest thing is, she smokes around her kids, in the car sometimes, outside while she kids are playing. It just slightly worries me that this could increase the risk of going back to where it started.

 

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