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Thread: Angry

  1. #1
    Newbie New User
    Join Date
    Feb 2017
    Posts
    1

    Angry

    Diagnosed last week with invasive nodular melanoma. It will be March 2 before I have surgery worried that cancer is spreading while lm waiting

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    7,114
    Sorry to have to welcome you here under these circumstances. Have you called other surgical centers for their surgical schedules, or asked to be placed on a cancellation schedule? You are your best advocate at this point, and can use some of that energy you have in the hope of finding an earlier surgical date.

    The National Cancer Institute maintains a list of designated cancer centers. The closest one seems to be:

    Markey Cancer Center
    University of Kentucky
    Lexington, Kentucky
    Cancer Center
    B. Mark Evers, M.D.
    Director
    CC140 Roach Building
    800 Rose Street
    Lexington, Kentucky 40536-0096
    Main: (859) 257-4500
    Toll Free: 1-866-340-4488
    Last edited by po18guy; 02-17-2017 at 04:16 PM.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  3. #3
    Senior User
    Join Date
    Jan 2014
    Location
    Colorado
    Posts
    312
    Just wanted to say welcome, in spite of the lousy circumstances, and agree with po18guy about being your own greatest advocate. If you call around, you may be able to get the process speeded up!

    Best of luck to you!

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016

  4. #4
    Top User
    Join Date
    May 2015
    Location
    Florida
    Posts
    797
    It is true you have to be your own advocate. I had to be my son's advocate when he was 14. We were told by three drs. that he had a cyst on his brain, they wanted him on Dilantin and it would be watched to see if it grew. Common sense told me it was growing or he would not be having problems in the first place. You can read about it in my signature. I just continued to press the issue with my husband and my son's drs. It was not easy but God finally had a genius of a dr., Dr. Robert Wharen of the Mayo Clinic, step forward. The rest is history.
    Maybe you could call everyday to see if there is a surgical opening. Keeping your name out there really helps.
    God bless.......
    Husband has PTCL-NOS......5 rounds of CHOPE chemo. At the end of chemo in June, they said Al was in remission. We were so happy! Last week, he had his 6 month PET scan and he's STILL in remission. God is good all the time! All the time God is good!

    We also have a son, our only child,who was found to have an ependymoma tumor when he was 17. He is now 40 years old and married. He's had 6 brain surgeries, to remove the benign tumor and to try to get the seizure activity which was impossible. He was enrolled in a clinical study to have an experimental neurotransmitter placed. He recently had to have the battery replaced after 6 years. He has not had a seizure in 11 years so far and we are so grateful to God.
    When I am afraid I put my trust in you. Psalms 53:6

    "Hope” is the thing with feathers –
    That perches in the soul
    And sings the tune without the words –
    And never stops – at all –
    Emily Dickinson

 

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