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Thread: My ten year old cousin is in remission

  1. #1
    Newbie New User
    Join Date
    Jun 2017

    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
    Join Date
    Feb 2012
    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.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    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 TEC (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 and precursor to Acute Myeloid Leukemia.
    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 measurable - 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. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    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. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    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.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

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

  3. #3
    Newbie New User
    Join Date
    Jun 2017
    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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