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Thread: Metastatic Adenocarcinoma - CUP.

  1. #11
    Regular User Chaase's Avatar
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    Confused as hell... After advice on what to do next

    Hi all UPDATE:

    2nd Laparoscopy was done on the 28th December, recovery has been pretty good.

    I got the Cytology report sent to me today in prep for the Dr appt tomorrow. I'm still waiting on a 2nd pathology report.

    Now I am confused as hell.

    Events of the last 4 weeks:
    • Cytology#1 - Positive for Metastatic Adenocarcinoma - revised to Suspicious rather than positive
    • Dx of: Yes you have it but we don't know where or what - we will organise a 2nd laparoscopy to try & find it
    • 2nd procedure completed - removal of what appeared to be a mesenteric fat lump from mesentery fold & abdominal fluid sent to pathology
    • Cytology #2 - No malignant cells seen...
    • Pathology of lump - TBC


    I know my Dr is the best bet for information, I know I can't be given a Dx but I just need advice on what to do now, what tests do I ask for...

    I know I should be jumping for joy that the 2nd one has come back clear but I am petrified that they have missed something or that there is now nothing to do but wait and see... Especially as my gyno/onco has told me yes you have it...

  2. #12
    Regular User Chaase's Avatar
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    Saw the GP - all of my results & tests are going to the medical panel. I have also had more bloods and have to do a 24hr urine analysis.
    2016 - Dx - Unknown Location & Type.

    Further investigation to come.

  3. #13
    Super Moderator Top User po18guy's Avatar
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    You will have to trust them on their analysis. Some cancers (not saying you have cancer at all) are diabolically difficult to identify. Mistakes are made in both directions. Since the current findings oppose the former, you may rest assured that extra scrutiny will be given your case. Nerve wracking? Certainly.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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) 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 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.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    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.
    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 aspiration/biopsy reveals 2% cells with 20q Deletion, a form of Myelodysplastic Syndrome, yet a different form than in 2015. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and two of myeloid malignancy lend a certain symmetry to the journey.

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

  4. #14
    Regular User Chaase's Avatar
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    Certainly is, I will be getting more scans done at the end of March to see if anything can be found. Until then, I will just keep plodding along waiting
    2016 - Dx - Unknown Location & Type.

    Further investigation to come.

 

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