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Thread: Weird rash has shown up while waiting on second CT scan and biopsy/

  1. #1
    Newbie New User
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    Nov 2019

    Anyone had ultrasound AND ct scan?

    I am just wondering why a ct scan was ordered after an ultrasound? The ultrasound saw the enlarged lymphnode so what more can. Ct scan show? Is this just insurance b.s?
    Is a biopsy likely coming?
    Anyone with similar experience?

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Do you have a cancer history? Or just a swollen node? A CT certainly is not the insurance company playing around - they cost thousands and insurance companies do not enjoy paying for them. Doctor apparently wants a little more detail than the ultrasound shows, as they are a fairly grainy picture. CTs are more accurate as to detail.

  3. #3
    A CT scan is clearer, and the ultrasound may have identified the area they want to focus on.

    You definitely need to have a positive biopsy and/or pathology report before you officially have cancer. If the CT scan shows possible cancer, a biopsy may well be in your future.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0

    DOB 1956, in Pittsburgh, USA

  4. #4
    Newbie New User
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    Nov 2019

    Weird rash has shown up while waiting on second CT scan and biopsy/

    So. Basically I have been sent for tests but never had a real work up from my primary care doctor. The only other people I have seen are techs!
    The last scan showed abnormal nodes in neck down into chest. Next week will have a chest scan and biopsy of neck node.
    My initial sickness of fatigue and night sweats with the low grade fever and muscle aches.lasted around 5 weeks but has since disappeared. These tests are all being done on the basis of my very enlarged supraclavicular node.
    Now in the last week I have developed a itchy rash in my groin and stomach area with small patches on chest and shoulder. It seems like a lot of hair is beong combed out daily as well.
    This is so crazy..while I wait..I wonder if anyone has had these symptoms?

  5. #5
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    Nov 2019
    Oh and I had a mono spot test done (i went to urgent care and requested one) which was negative but I have heard these are not super accurate.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Your initial symptoms having subsided are consistent with one of the many viruses circulating, as is the enlarged node. 2019 has been one heck of a year for odd viruses. I am fighting #6 or 7 right now, but it is the common cold, or Human Rhino Virus. I have had Human Para-influenza Virus type 3, Human MetaPneumo Virus, Human Respiratory Syncytial Virus last year and several unidentified others this year which could not be identified even after every known viral panel was run.

    All symptoms are caused by the reaction of your immune system to infection. Bacteria, viruses and fungi have no ability to cause symptoms. Therefore, if your symptoms were severe, it was a substantial immune response to a rather nasty virus you were fighting.
    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.

  7. #7
    Newbie New User
    Join Date
    Nov 2019
    Thank you po18guy. Once I got my panic under control some , I kept thinking it seems more autoimmune. Cancer symptoms dont just stop right?
    So maybe I will sleep better tonight.Finding more "abnormal" nodes in my chest really freaks me out. What does that mean exactly!
    Anyway I cant let my mind go there.
    And seeing your history, oh my gosh. I send you healing thoughts as well!


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