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Thread: An Unusual Case of Small Cell Esophageal Cancer

  1. #1
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    An Unusual Case of Small Cell Esophageal Cancer

    My mother was feeling unwell, and we were forced to have her admitted to hospital because her sodium level was at 120, while a normal level is between 135 and 145. After a number of tests and days spent monitoring and regulating her sodium levels, she was diagnosed with Syndrome of Inappropriate Antidiuretic Hormone (SIADH), which causes life-threatening, low sodium levels.

    After spending almost a week in the hospital on a restricted fluid intake, and undergoing many CT scans, she was sent home with urea which is a medicine that is meant to help correct her SIADH condition. This seemed to help for a limited time, but after finishing the dosage she began feeling the same symptoms as before (nausea, weakness, and incoherence).

    I took her back to Emergency and after bloodwork her sodium level was at 116. During this admission to the hospital they performed a barium swallow x-ray, and the doctors found an abnormality in her esophagus/stomach. After, they proceeded with a scope and biopsy of the affected area. Once receiving many sodium IV drips, my mother’s sodium reached safer levels, and was sent home. Now we just had to wait for the results of the biopsy.

    She was forced only days after to be readmitted to the hospital because the effects of the SIADH. While in hospital, the biopsy results came back showing that she had small cell carcinoma of the esophagus, which is a rare and aggressive disease. Only one other person in our city had dealt with a similar diagnosis.

    Because of the location of the tumour and type of cancer she was told that surgery would be out of the question. After performing more CT scans, they found several lesions in the right and left lobes of the liver, and the cancer had metastasized to the lymph nodes as well.

    My mother began her chemotherapy treatment which lasted a total of three days and corrected her SIADH almost immediately. It is of note that the saline drips were struggling to control the SIADH during this last admission. Now, after three weeks she is just beginning her second round of chemo.

    This is where we are currently in her journey. We want to reach out for the small chance that anyone out there has been diagnosed or knows anyone facing the same type of rare cancer as my mother. Any type of advice, information, or help is greatly appreciated.
    Last edited by po18guy; 11-10-2018 at 03:24 AM. Reason: paragraphs added for clarity

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Very sorry to hear of this. Diabolical stuff, masquerading as a much different condition. I would hope that her oncologist(s) have consulted around the cancer world for the best and most research-driven treatment protocol. Even though the prognosis may be dismal, someone beats every cancer. May it be your mom! Do let us know how things go with treatment.
    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 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 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 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).
    09/18 Due to refractory GvHD, treatment with Imbruvica (Ibrutinib) or clinical trial of Interleukin2 being considered.

    To date: 1 cancer, relapse, 2 cancers, then 3 cancers simultaneously, 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.

 

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