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Thread: How to tell a child they have cancer (and should you?)

  1. #11
    Moderator Top User
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    just to update the thread.

    he completed chemo is december. received a clear CT/PET in January and a clear x-ray last week. Next scan late June. Looks like we are out of the woods for now.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  2. #12
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by NikosF View Post
    just to update the thread.

    he completed chemo is december. received a clear CT/PET in January and a clear x-ray last week. Next scan late June. Looks like we are out of the woods for now.
    Great news! Thank you for the update.
    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.

  3. #13
    Moderator Top User jorola's Avatar
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    Best news ever!!!!!!!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  4. #14
    Senior User IndyLou's Avatar
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    Wonderful news! I'm very happy for both your son and your family! May he live a long and happy life!

  5. #15
    Senior User Dead Man Walking's Avatar
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    Just to add a data point to this thread, Annabelle and I see anywhere from 8 - 20 children with leukemia a week, and in all cases it's absolutely remarkable how well they cope with it. Obviously I'm not allowed to ask them if they're scared, how they feel, or any medical details of their condition, but I can't ever remember visiting a child with a bald head crying, or acting scared about their condition. Thinking about it for a second, this has to be a fairly major miracle (leap of faith?) that these kids accomplish, but it's the norm for all the kids I have seen.

    NOTE!! This should be clearly distinguished from telling a child that they have leukemia, and I've never been present for one of THOSE sessions.
    Last edited by Dead Man Walking; 05-23-2017 at 07:59 PM.
    05/6/16 2 pre-op physicals show low WBC & RBC
    05/16/16 Have BM biopsy - GULP!!
    05/22/16 [Birthday] Results are AML 22% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML.
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks. Change regarded as minor.
    Oncologist says my run is unprecedented.

 

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