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Thread: Recurrence maybe

  1. #1
    Newbie New User
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    Oct 2018
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    Recurrence maybe

    Hello,

    I have had Papillary thyroid cancer treatment 4 years ago. 9 out of 19 lymph nodes taken out at the time of surgery were positive. But last exam was a good one last March. Then in July I found a lump above my collarbone. Fast forward a bunch of tests and biopsy appointment for a week from today. The waiting has been agony. All the tests I have had locally result in "reactive node" but see your oncologist for further review. He is 2 hours away at University of Michigan. I did the TG test last week at a U of M lab and it has gone up from .4 to .7 with non detectable antibodies. So I still don't know for sure but I feel like I have been through hell anyway.

    The reason I am posting is my husband is really emotionally absent this time around. I feel he gave what he could last time and he has nothing for me now. I have made arrangements for my daughter to go with me next week to U of M. But I am still scared I have never made the drive myself. And I don't lean on my daughter she leans on me.

    I am just looking for guidance for how to deal with the cancer crap when your spouse is not supportive. How to face tests and diagnose and treatment alone.

    I appreciate any input.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    9,751
    Sorry to hear this. I'll play your hubby for a few minutes here.

    1. Do not torture yourself with worry! What has it done except rob you of peace!
    2. "Reactive" is good good good news, as cancerous nodes do not appear reactive (i.e.normally functioning).
    3. The doctor's referral is based on your history, not anything that they have observed so far. You could sue their socks off if they did not refer you, and they are well aware of this.

    I shall set #4 off by itself:

    4. You do not have cancer until a pathology report says you have cancer.

    Repeat it. Memorize it. Tape it on your bathroom mirror, your fridge, your car's dashboard.

    5. If you are a natural worrier, consider getting a spiral notebook and writing your daily worries down in it. Periodically, go back through it and cross off those worries which never manifested themselves. I'll bet that you cross all of them off - if not, those which came to pass were not as severe as feared. This practice gives us hard evidence of just how much worrying we actually engage in, and the fact that all worrying is useless. Keeping the book gives you power over those worries as you strike them through, sending them away permanently.

    Please keep us updated!
    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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