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Thread: Worried about missed Pancreatic Cancer

  1. #11
    Super Moderator Top User po18guy's Avatar
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    My advice is to not focus on the cancer you do not have. Focus on the anxiety that you do have. You are doubting the best test results that anyone could hope for. Anxiety is the fuel of doubt. Ask the psychologist about Cognitive Behavioral Therapy. You deserve to live in peace.
    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.

  2. #12
    Super Moderator Top User ddessert's Avatar
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    If those liver spots were metastases and were from a cancer in another organ, Iíd think you wouldnít need to ask by now.

    Many people have benign spots on their organs that never turn into cancer. Itís one reason that healthy people donít get internal imaging done. Things will be found that initiate all sorts of additional testing that cause more harm than good, just as youíre experiencing right now.

    I have two spots on my lungs that have not changed in the 7 years Iíve been getting scans. Theyíre not cancer.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  3. #13
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    Quote Originally Posted by ddessert View Post
    If those liver spots were metastases and were from a cancer in another organ, I’d think you wouldn’t need to ask by now.

    Many people have benign spots on their organs that never turn into cancer. It’s one reason that healthy people don’t get internal imaging done. Things will be found that initiate all sorts of additional testing that cause more harm than good, just as you’re experiencing right now.

    I have two spots on my lungs that have not changed in the 7 years I’ve been getting scans. They’re not cancer.

    You are obviously right. And normally I am doing fine, and living without anxiety. However, when I have symptoms and have horrible diarrhea, then I cannot help but wonder/fear what can cause it. I agree that I have had almost all test possible, and nothing suspicious was found, but still. It is horrible not knowing what is causing my symptoms. They just come without warning, no pattern whatsoever.
    Last edited by laci06; 01-13-2019 at 07:07 PM.

  4. #14
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    Quote Originally Posted by Baz10 View Post
    My two cents (for what they are worth) is.
    Question
    and in no way do I mean disrespect
    Would you prefer your doctor to say
    “Yes you have cancer, PC or CRC or indeed any type of cancer”.
    I know your answer as every one would answer - NO.
    Suggestion
    Unfortunately if you chase every cancer possibility, subconsciously your brain / body will oblige with innumerable sub symptoms that pervade every thought.
    Result
    Exactly where you are now.
    Mostly you have answered the questions asked in your latest update yourself.
    Barry
    Obviously I do not want to be diagnosed with cancer. But if I happen to have cancer, then I would like to know as soon as possible that is why I was pushing for so many things. Also, having diarrhea is awful, especially since I do not know why I have it. Well, I really hope that as time goes on I will get better. Certainly my anxiety should go away (it was much worse back in August), just because time + me not being not worse = no cancer.
    Last edited by laci06; 01-13-2019 at 07:07 PM.

  5. #15
    Super Moderator Top User po18guy's Avatar
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    If you suspect cancer each time your body acts up, you will not have a single day of peace in your life. Please read the sticky regarding health anxiety.

    https://www.cancerforums.net/threads...-Cyberchondira

 

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