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Thread: Metastatic Adenocarcinoma - CUP.

  1. #11
    Regular User Chaase's Avatar
    Join Date
    Dec 2016

    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
    Join Date
    Dec 2016
    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
    Join Date
    Feb 2012
    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 ("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.
    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).
    To date: 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.

  4. #14
    Regular User Chaase's Avatar
    Join Date
    Dec 2016
    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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