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Thread: Melanoma at 28- what’s next?

  1. #1

    Melanoma at 28- what’s next?

    Hi everyone, I have recently been diagnosed with melanoma. I went for 5 biopsy’s, the results returning with 4 being abnormal and pre cancerous, and 1 being melanoma. The plastic surgeon has booked me in to re-open the area and take larger margins in 5 weeks. I’m not sure why he is waiting that long, but that is the plan. Can anyone tell me their experience from this point? I haven’t heard from the referring dermatologist, or my family doctor. I’ve been reading about possible spreading, but haven’t been informed of any further testing at all.
    Also, what am I looking at for long term follow up? I have been planning to move 5 months from now to a country with less than ideal healthcare, that is up until this diagnosis. I am really hoping this doesn’t bring my long term goals to a hault. Any input recommendations or experience you have could really help me and I would really appreciate it.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Sorry to hear this. I would agitate until I got an expedited appointment or ask to be placed on the cancellation list. Or, ask for a referral to another surgeon who is not booked so far out.
    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 TEC (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 measurable - 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. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    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. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    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.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

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

  3. #3
    Senior User
    Join Date
    Jan 2014
    Hi Gypsysoul,

    In my experience, what happens next will depend on the stage of the melanoma. Generally speaking, melanoma in situ and stage I-II melanoma are treated with surgical removal that ensures clear margins, after which time you would then go in for regular followup skin checks with a dermatologist and for stage II possibly an oncologist (I am not entirely sure about whether stage II followup requires followup with both), wear sunscreen and otherwise protect your skin very well.

    If the melanoma is stage III, this is when lymph nodes are involved. Generally lymph node involvement does not need to be checked for with the early stage melanomas that are thin enough that are less likely to have spread, and it is not curative, it is done for staging purposes. Deeper or more advanced melanoma may have spread through the lymph system, so they would likely then check for lymph node involvement. If the nodes test negative, nothing further is done except close followup with a melanoma specialist or oncologist. Stage IV melanoma is melanoma that has spread/metastasized to other parts of the body and it is treated with surgery and/or some type of combination drug therapy, and again that is where you would need close followup with a melanoma specialist at a major cancer center for treatment, so these are stages where you would not want to compromise on the quality of your healthcare.

    My thought is you'll be able to decide whether or not you want to move once you know what stage melanoma you are dealing with and what type of care you need from here on out.

    I hope that helps. I'm not a doctor or nurse, but those are my thoughts on how I personally would go about a decision like this one.

    As far as the margins in 5 weeks, you didn't say whether there was melanoma remaining, but even if they got all the melanoma with the biopsy, if they found it came too close to one of the edges, they will want to go back and make sure they get the required margins. They are very careful with melanoma to ensure that you have nice wide margins free of melanoma all the way around, and it is standard procedure to go back in to make sure those margins are sufficient and clear.

    Best of luck to you!

    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
    No sign of recurrence, January 2019


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