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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
    8,138
    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. 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.
    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.
    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. Active surveillance is the course of choice.
    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. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

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

  3. #3
    Senior User
    Join Date
    Jan 2014
    Location
    Colorado
    Posts
    317
    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
    1,010
    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.......
    67 year old husband diagnosed with Periphial T Cell Lymphoma Feb. 2015
    5 rounds of CHOPE chemo put him into remission for 2 years....
    June 2017 Relapse....radiation planned
    Develops ITP, Low platelets....Hospitalized 3 days to be given Gamma Gloublin....discharged....gave prednisone but forgot to give scripts for that and Klonopin....results in steroid psychosis from Prednisone.....second time this has happened. Had one instance of it during previous chemo.
    ITP recurs....4,000 platelets
    Al had spleen removed Sept. 25. It went well. Platelets up to 100,000but since he was given platelets the day before and during surgery the dr. wants to give it a few more days to see if platelets keep rising. Still in hospital. Good attitude. Grateful to God!
    Also caregiver to our 40 year old son who had a benign ependymoma tumor removed when he was 14 years old. 6 brain surgeries.
    Thank you God for all your blessings! 🙏❤️🙏

 

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